Sign-in to Ask A Doctor - 24x7
OR
Sign in with Google
Is A Prominent Asymmetrical Left Sylvian Fissure Associated With Leukoencephalopathy
Question: Is a Prominent asymmetrical left Sylvian fissure associated with leukoencephalopathy ? (from pet scan)
Is a Prominent asymmetrical left Sylvian fissure associated with leukoencephalopathy ? (from pet scan)
Brief Answer:
PET scan results should not be overcalled for making ANATOMICAL diagnoses
Detailed Answer:
Good evening.
A prominent can be a sign of a number of possible abnormalities. It is not a very SPECIFIC radiographic sign and especially if being made purely by means of PET scan which is really most useful when interpreting METABOLIC ACTIVITY at the cellular level in the brain or other organs. It is not indicated to be used to make ANATOMICAL IDENTIFICATIONS of exact localization of things or even what they mean.
Therefore, in the strict sense of how we should order tests and interpret results. I would not order a PET scan on anybody if I were worried primarily of LEUKOENCEPHALOPATHY. I would be ordering either a CT or MRI scan. In other words, the latter 2 scans are considered to be ANATOMICALLY precise testing procedures which can give valuable and precise information on the ANATOMY of someone's brain structures. A PET SCAN IS NOT DESIGNED for such a diagnostic differential for anatomical structures....UNLESS it has been COMBINED with either a CT or MRI scan.
And so again, to be clear if we are talking strictly about a PET scan and nothing else then, I would not be making a final diagnosis on anybody as having a widened or ENLARGED Sylvian fissure since this is really the job of the MRI scan.
Having said the above....it is true that an ASYMMETRICALLY widened SYLVIAN FISSURE is sometimes the radiographic sign of a process of deterioration or atrophy of the cortex or enlargement of a ventricle which could lead to a HYDROCEPHALIC situation. As far as a LEUKOENCEPHALOPATHIC diagnosis is concerned...it is certainly NOT the most common abnormality associated with enlarged or asymmetrically widened SYLVIAN fissures but could such a diagnosis BE in the differential?
Yes, that could be a consideration but as I said the lack of specificity of the imaging study (especially if ONLY a PET scan) would prevent me from making a FINAL diagnosis until I knew much more about the patient as well as having examined them. I would look to verify the diagnosis of a leukoencephalopathy first by PHYSICAL EXAMINATION (by a neurologist) and then, imaging wise, I'd use either a CT scan or an MRI scan.
I would not use a PET scan to make the diagnosis of leukencephalopathy....really doesn't add anything and may even cause a bit of unnecessary confusion if the interpretation is over read for specificity of such a finding in the absence of supportive examination data.
If I've provided useful or helpful information to your questions could you do me the utmost of favors by CLOSING THE QUERY along with a few positive words of feedback and maybe even a 5-star rating if you feel it is deserving? I am definitely interested in getting updated information on your condition if you'd care to drop me a line at www.bit.ly/drdariushsaghafi and let me know how things turn out.
You can always reach me at the above address for this and other questions. I wish you the best with everything and hope our discussion has aided in your understanding of a few concepts related to your concerns.
Regards,
This query required 80 minutes of professional time to research, assimilate, and file a response.
PET scan results should not be overcalled for making ANATOMICAL diagnoses
Detailed Answer:
Good evening.
A prominent can be a sign of a number of possible abnormalities. It is not a very SPECIFIC radiographic sign and especially if being made purely by means of PET scan which is really most useful when interpreting METABOLIC ACTIVITY at the cellular level in the brain or other organs. It is not indicated to be used to make ANATOMICAL IDENTIFICATIONS of exact localization of things or even what they mean.
Therefore, in the strict sense of how we should order tests and interpret results. I would not order a PET scan on anybody if I were worried primarily of LEUKOENCEPHALOPATHY. I would be ordering either a CT or MRI scan. In other words, the latter 2 scans are considered to be ANATOMICALLY precise testing procedures which can give valuable and precise information on the ANATOMY of someone's brain structures. A PET SCAN IS NOT DESIGNED for such a diagnostic differential for anatomical structures....UNLESS it has been COMBINED with either a CT or MRI scan.
And so again, to be clear if we are talking strictly about a PET scan and nothing else then, I would not be making a final diagnosis on anybody as having a widened or ENLARGED Sylvian fissure since this is really the job of the MRI scan.
Having said the above....it is true that an ASYMMETRICALLY widened SYLVIAN FISSURE is sometimes the radiographic sign of a process of deterioration or atrophy of the cortex or enlargement of a ventricle which could lead to a HYDROCEPHALIC situation. As far as a LEUKOENCEPHALOPATHIC diagnosis is concerned...it is certainly NOT the most common abnormality associated with enlarged or asymmetrically widened SYLVIAN fissures but could such a diagnosis BE in the differential?
Yes, that could be a consideration but as I said the lack of specificity of the imaging study (especially if ONLY a PET scan) would prevent me from making a FINAL diagnosis until I knew much more about the patient as well as having examined them. I would look to verify the diagnosis of a leukoencephalopathy first by PHYSICAL EXAMINATION (by a neurologist) and then, imaging wise, I'd use either a CT scan or an MRI scan.
I would not use a PET scan to make the diagnosis of leukencephalopathy....really doesn't add anything and may even cause a bit of unnecessary confusion if the interpretation is over read for specificity of such a finding in the absence of supportive examination data.
If I've provided useful or helpful information to your questions could you do me the utmost of favors by CLOSING THE QUERY along with a few positive words of feedback and maybe even a 5-star rating if you feel it is deserving? I am definitely interested in getting updated information on your condition if you'd care to drop me a line at www.bit.ly/drdariushsaghafi and let me know how things turn out.
You can always reach me at the above address for this and other questions. I wish you the best with everything and hope our discussion has aided in your understanding of a few concepts related to your concerns.
Regards,
This query required 80 minutes of professional time to research, assimilate, and file a response.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
PET scan results should not be overcalled for making ANATOMICAL diagnoses
Detailed Answer:
Good evening.
A prominent can be a sign of a number of possible abnormalities. It is not a very SPECIFIC radiographic sign and especially if being made purely by means of PET scan which is really most useful when interpreting METABOLIC ACTIVITY at the cellular level in the brain or other organs. It is not indicated to be used to make ANATOMICAL IDENTIFICATIONS of exact localization of things or even what they mean.
Therefore, in the strict sense of how we should order tests and interpret results. I would not order a PET scan on anybody if I were worried primarily of LEUKOENCEPHALOPATHY. I would be ordering either a CT or MRI scan. In other words, the latter 2 scans are considered to be ANATOMICALLY precise testing procedures which can give valuable and precise information on the ANATOMY of someone's brain structures. A PET SCAN IS NOT DESIGNED for such a diagnostic differential for anatomical structures....UNLESS it has been COMBINED with either a CT or MRI scan.
And so again, to be clear if we are talking strictly about a PET scan and nothing else then, I would not be making a final diagnosis on anybody as having a widened or ENLARGED Sylvian fissure since this is really the job of the MRI scan.
Having said the above....it is true that an ASYMMETRICALLY widened SYLVIAN FISSURE is sometimes the radiographic sign of a process of deterioration or atrophy of the cortex or enlargement of a ventricle which could lead to a HYDROCEPHALIC situation. As far as a LEUKOENCEPHALOPATHIC diagnosis is concerned...it is certainly NOT the most common abnormality associated with enlarged or asymmetrically widened SYLVIAN fissures but could such a diagnosis BE in the differential?
Yes, that could be a consideration but as I said the lack of specificity of the imaging study (especially if ONLY a PET scan) would prevent me from making a FINAL diagnosis until I knew much more about the patient as well as having examined them. I would look to verify the diagnosis of a leukoencephalopathy first by PHYSICAL EXAMINATION (by a neurologist) and then, imaging wise, I'd use either a CT scan or an MRI scan.
I would not use a PET scan to make the diagnosis of leukencephalopathy....really doesn't add anything and may even cause a bit of unnecessary confusion if the interpretation is over read for specificity of such a finding in the absence of supportive examination data.
If I've provided useful or helpful information to your questions could you do me the utmost of favors by CLOSING THE QUERY along with a few positive words of feedback and maybe even a 5-star rating if you feel it is deserving? I am definitely interested in getting updated information on your condition if you'd care to drop me a line at www.bit.ly/drdariushsaghafi and let me know how things turn out.
You can always reach me at the above address for this and other questions. I wish you the best with everything and hope our discussion has aided in your understanding of a few concepts related to your concerns.
Regards,
This query required 80 minutes of professional time to research, assimilate, and file a response.
PET scan results should not be overcalled for making ANATOMICAL diagnoses
Detailed Answer:
Good evening.
A prominent can be a sign of a number of possible abnormalities. It is not a very SPECIFIC radiographic sign and especially if being made purely by means of PET scan which is really most useful when interpreting METABOLIC ACTIVITY at the cellular level in the brain or other organs. It is not indicated to be used to make ANATOMICAL IDENTIFICATIONS of exact localization of things or even what they mean.
Therefore, in the strict sense of how we should order tests and interpret results. I would not order a PET scan on anybody if I were worried primarily of LEUKOENCEPHALOPATHY. I would be ordering either a CT or MRI scan. In other words, the latter 2 scans are considered to be ANATOMICALLY precise testing procedures which can give valuable and precise information on the ANATOMY of someone's brain structures. A PET SCAN IS NOT DESIGNED for such a diagnostic differential for anatomical structures....UNLESS it has been COMBINED with either a CT or MRI scan.
And so again, to be clear if we are talking strictly about a PET scan and nothing else then, I would not be making a final diagnosis on anybody as having a widened or ENLARGED Sylvian fissure since this is really the job of the MRI scan.
Having said the above....it is true that an ASYMMETRICALLY widened SYLVIAN FISSURE is sometimes the radiographic sign of a process of deterioration or atrophy of the cortex or enlargement of a ventricle which could lead to a HYDROCEPHALIC situation. As far as a LEUKOENCEPHALOPATHIC diagnosis is concerned...it is certainly NOT the most common abnormality associated with enlarged or asymmetrically widened SYLVIAN fissures but could such a diagnosis BE in the differential?
Yes, that could be a consideration but as I said the lack of specificity of the imaging study (especially if ONLY a PET scan) would prevent me from making a FINAL diagnosis until I knew much more about the patient as well as having examined them. I would look to verify the diagnosis of a leukoencephalopathy first by PHYSICAL EXAMINATION (by a neurologist) and then, imaging wise, I'd use either a CT scan or an MRI scan.
I would not use a PET scan to make the diagnosis of leukencephalopathy....really doesn't add anything and may even cause a bit of unnecessary confusion if the interpretation is over read for specificity of such a finding in the absence of supportive examination data.
If I've provided useful or helpful information to your questions could you do me the utmost of favors by CLOSING THE QUERY along with a few positive words of feedback and maybe even a 5-star rating if you feel it is deserving? I am definitely interested in getting updated information on your condition if you'd care to drop me a line at www.bit.ly/drdariushsaghafi and let me know how things turn out.
You can always reach me at the above address for this and other questions. I wish you the best with everything and hope our discussion has aided in your understanding of a few concepts related to your concerns.
Regards,
This query required 80 minutes of professional time to research, assimilate, and file a response.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
This is the MRI and dt scan closest to the timing of the PET scan. These encpholphy issuses have been developing for 10 years. There is a hereditary factor involved. He has also had 2 other brothers that have had very similar syptoms.
thank you so much for the information. The new theory has been leukoencephalopathy. I am trying to figure out what had broygjt them to this concludion.
thank you so much for the information. The new theory has been leukoencephalopathy. I am trying to figure out what had broygjt them to this concludion.
This is the MRI and dt scan closest to the timing of the PET scan. These encpholphy issuses have been developing for 10 years. There is a hereditary factor involved. He has also had 2 other brothers that have had very similar syptoms.
thank you so much for the information. The new theory has been leukoencephalopathy. I am trying to figure out what had broygjt them to this concludion.
thank you so much for the information. The new theory has been leukoencephalopathy. I am trying to figure out what had broygjt them to this concludion.
Brief Answer:
Thank you for the clarifications-- the plot thickens
Detailed Answer:
I've looked at both REPORTS carefully and read them several times looking for the evidence of either an ASYMMETRIC SYLVIAN FISSURE widening or other information that would suggest the presence of a LEUKOENCEPHALOPATHY as either a likely or even possible underlying etiology to whatever the symptoms of declining cognitive issues are with behavioral disturbance.
Here's what the reports are telling me....well, here's what NEITHER report tells me which I would very much like to know....HOW OLD IS THE PERSON being scanned? I am guessing that we are talking about someone in their 60's, 70's, or possibly 80's in age...although if LEUKOENCEPHALOPATHY is the working diagnosis then, I'd choose the lesser of the 3 decades I've listed since usually this family of disorders becomes prominent enough if it develops after birth or childhood so that at least by the 4th or 5th decade people are being taken to the doctor to get scanned and examined for issues related to early onset dementia, parkinsonisms, etc. At any rate, you've got the magic answer so I'll await.
Secondly, the DaT scan states that it is a normal study with normal bilateral radiotracer uptake in both BASAL GANGLIA which is where people typically look when trying to make a diagnosis of a TREMOR due to PARKINSON'S DISEASE. DaT scans have a single FDA approval which is to look at people with tremors who cannot be distinguished between PARKINSON'S DISEASE vs. ESSENTIAL TREMOR. (on the basis of the tremor).
Since the clinical information is mentioning something about an underlying behavioral issue on top of what appears to be a progressive dementing process then, I'm going to guess that the person being scanned has some form of parkinsonisms (which may very well include tremors) but mainly has cognitive or neuropsychiatric changes which are being considered in the context of things such as LEWY BODY DISEASE or FRONTOTEMPORAL LOBE dementia although again DaT scans are really not designed to rule in or out those diagnoses....just for distinguishing tremors of PARKINSON'S DISEASE vs. ESSENTIAL TREMOR. Since the scan is NORMAL then, it is really not helpful to making or excluding anything else from a technical point of view.
In neither study do I see any mention of a widened or asymmetrically widened SYLVIAN (LATERAL FISSURE OR SULCUS) so I'm assuming that's something that was mentioned in the PET scan. When I first read that I think we were going to be talking about a small infant or child who may have been suffering with Glutaric Aciduria which is an error in metabolism and most commonly said to be linked to the presence of WIDENED Sylvian Fissures but in that entity the volume loss and widening of the fissures are BILATERALLY (both sides) so a unilateral finding is a bit odd though it can still happen and perhaps is like that anyway in its earliest onset but at any rate...that's what I thought we were talking about.
The other thing that the MRI scan mentions is a history of a single ACUTE PROGRESSING STROKE.....so did this patient have a STROKE? If so, then, that could explain why one side of the side brain has a widened SYLVIAN FISSURE but this would be due to ENCEPHALOMALACIA (brain atrophy) as opposed to a LEUKOENCEPHALOPATHY which is completely different. Leukoencephalopathy is a famil of disease processes which are characterized by metabolic errors at the cellular level. But the MR scan would suggest a different history. Perhaps, the physician who ordered the scan simply used the term "stroke" to get the scan paid for by the insurance company? Unfortunately, we pull that little trick all the time so that we are given at least a LITTLE PROFESSIONAL autonomy in using tests in the benefit of the patient.
So, the MRI scan really doesn't give me any additional information except to say that this person has age related small vessel ischemic disease as well as age related volume loss changes....neither of these are particularly noteworthy for the purpose of making the long of an asymmetry in the lateral fissures or the presence of a leukoencephalopathy.....or even the stroke that is being called in the history as having occurred. It really doesn't appear that the MRI is even seeing that.....hmmm...perhaps, you are going to explain that one to me as well? HA!
So, in my opinion and based upon present diagnostic/historic information I still do not see where LEUKOENCEPHALOPATHY comes into play....usually that is something that can be SEEN and visually appreciated on an MRI scan...even a CT scan but for some reason the radiologist is keeping us guessing? Or...it ain't there radiographically.
Of course, 2 brothers who have similar symptoms is an interesting clue....but only if you tell what the other 2 brothers have been genetically tested and proven to have???? Or that their scans all look the same and none have been genetically tested?
Hmmm....I'll stop guessing because some of this isn't really hanging....I think I'd need to look at the doctor's notes (better yet the NEUROLOGIST's notes) in order to get a better handle on what they're thinking when ordering these tests as well as understanding the constellation of symptoms that are being presented and evolving in both the patient as well as siblings.
But again, so far, imaging wise? Leukoencephalopathy doesn't jump out as me the way, "dementing illness" (from the MRI) and "PARKINSONISMS" (albeit in the face of a normal DaT scan) do which when I put those 2 together leads me to a diagnostic constellation of Alzheimer's disease (with behavioral manifestations), early onset PD with Alzheimerian features (occurs in about 25% of PD patients), Alzheimer's disease on a background of parkinsonian features (early onset), Lewy Body disease (most likely given the clinical information on the scans), and then, something along the lines of FRONTOTEMPORAL LOBE DEMENTIA (which has a cognitive component that resembles Alzheimer's and is apparent as early on as the 30's...I'm going to guess LESS LIKELY since the DaT scan was obtained).
Once again, if you don't think I'm just Whistling Dixie and have given you some good information to contemplate could you do me a large favor by CLOSING THE QUERY along with some positive feedback and a 5-star rating if you're particularly generous? I am very curious at this mystery and would love to get updated information on the condition if you'd care to drop me a line at www.bit.ly/drdariushsaghafi and let me know how things turn out.
You can always reach me at the above address for this and other questions. I wish you the best with everything and hope our discussion has aided in your understanding of a few concepts related to your concerns.
Regards,
This query required 170 minutes of professional time to research, assimilate, and file a response.
Thank you for the clarifications-- the plot thickens
Detailed Answer:
I've looked at both REPORTS carefully and read them several times looking for the evidence of either an ASYMMETRIC SYLVIAN FISSURE widening or other information that would suggest the presence of a LEUKOENCEPHALOPATHY as either a likely or even possible underlying etiology to whatever the symptoms of declining cognitive issues are with behavioral disturbance.
Here's what the reports are telling me....well, here's what NEITHER report tells me which I would very much like to know....HOW OLD IS THE PERSON being scanned? I am guessing that we are talking about someone in their 60's, 70's, or possibly 80's in age...although if LEUKOENCEPHALOPATHY is the working diagnosis then, I'd choose the lesser of the 3 decades I've listed since usually this family of disorders becomes prominent enough if it develops after birth or childhood so that at least by the 4th or 5th decade people are being taken to the doctor to get scanned and examined for issues related to early onset dementia, parkinsonisms, etc. At any rate, you've got the magic answer so I'll await.
Secondly, the DaT scan states that it is a normal study with normal bilateral radiotracer uptake in both BASAL GANGLIA which is where people typically look when trying to make a diagnosis of a TREMOR due to PARKINSON'S DISEASE. DaT scans have a single FDA approval which is to look at people with tremors who cannot be distinguished between PARKINSON'S DISEASE vs. ESSENTIAL TREMOR. (on the basis of the tremor).
Since the clinical information is mentioning something about an underlying behavioral issue on top of what appears to be a progressive dementing process then, I'm going to guess that the person being scanned has some form of parkinsonisms (which may very well include tremors) but mainly has cognitive or neuropsychiatric changes which are being considered in the context of things such as LEWY BODY DISEASE or FRONTOTEMPORAL LOBE dementia although again DaT scans are really not designed to rule in or out those diagnoses....just for distinguishing tremors of PARKINSON'S DISEASE vs. ESSENTIAL TREMOR. Since the scan is NORMAL then, it is really not helpful to making or excluding anything else from a technical point of view.
In neither study do I see any mention of a widened or asymmetrically widened SYLVIAN (LATERAL FISSURE OR SULCUS) so I'm assuming that's something that was mentioned in the PET scan. When I first read that I think we were going to be talking about a small infant or child who may have been suffering with Glutaric Aciduria which is an error in metabolism and most commonly said to be linked to the presence of WIDENED Sylvian Fissures but in that entity the volume loss and widening of the fissures are BILATERALLY (both sides) so a unilateral finding is a bit odd though it can still happen and perhaps is like that anyway in its earliest onset but at any rate...that's what I thought we were talking about.
The other thing that the MRI scan mentions is a history of a single ACUTE PROGRESSING STROKE.....so did this patient have a STROKE? If so, then, that could explain why one side of the side brain has a widened SYLVIAN FISSURE but this would be due to ENCEPHALOMALACIA (brain atrophy) as opposed to a LEUKOENCEPHALOPATHY which is completely different. Leukoencephalopathy is a famil of disease processes which are characterized by metabolic errors at the cellular level. But the MR scan would suggest a different history. Perhaps, the physician who ordered the scan simply used the term "stroke" to get the scan paid for by the insurance company? Unfortunately, we pull that little trick all the time so that we are given at least a LITTLE PROFESSIONAL autonomy in using tests in the benefit of the patient.
So, the MRI scan really doesn't give me any additional information except to say that this person has age related small vessel ischemic disease as well as age related volume loss changes....neither of these are particularly noteworthy for the purpose of making the long of an asymmetry in the lateral fissures or the presence of a leukoencephalopathy.....or even the stroke that is being called in the history as having occurred. It really doesn't appear that the MRI is even seeing that.....hmmm...perhaps, you are going to explain that one to me as well? HA!
So, in my opinion and based upon present diagnostic/historic information I still do not see where LEUKOENCEPHALOPATHY comes into play....usually that is something that can be SEEN and visually appreciated on an MRI scan...even a CT scan but for some reason the radiologist is keeping us guessing? Or...it ain't there radiographically.
Of course, 2 brothers who have similar symptoms is an interesting clue....but only if you tell what the other 2 brothers have been genetically tested and proven to have???? Or that their scans all look the same and none have been genetically tested?
Hmmm....I'll stop guessing because some of this isn't really hanging....I think I'd need to look at the doctor's notes (better yet the NEUROLOGIST's notes) in order to get a better handle on what they're thinking when ordering these tests as well as understanding the constellation of symptoms that are being presented and evolving in both the patient as well as siblings.
But again, so far, imaging wise? Leukoencephalopathy doesn't jump out as me the way, "dementing illness" (from the MRI) and "PARKINSONISMS" (albeit in the face of a normal DaT scan) do which when I put those 2 together leads me to a diagnostic constellation of Alzheimer's disease (with behavioral manifestations), early onset PD with Alzheimerian features (occurs in about 25% of PD patients), Alzheimer's disease on a background of parkinsonian features (early onset), Lewy Body disease (most likely given the clinical information on the scans), and then, something along the lines of FRONTOTEMPORAL LOBE DEMENTIA (which has a cognitive component that resembles Alzheimer's and is apparent as early on as the 30's...I'm going to guess LESS LIKELY since the DaT scan was obtained).
Once again, if you don't think I'm just Whistling Dixie and have given you some good information to contemplate could you do me a large favor by CLOSING THE QUERY along with some positive feedback and a 5-star rating if you're particularly generous? I am very curious at this mystery and would love to get updated information on the condition if you'd care to drop me a line at www.bit.ly/drdariushsaghafi and let me know how things turn out.
You can always reach me at the above address for this and other questions. I wish you the best with everything and hope our discussion has aided in your understanding of a few concepts related to your concerns.
Regards,
This query required 170 minutes of professional time to research, assimilate, and file a response.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
Thank you for the clarifications-- the plot thickens
Detailed Answer:
I've looked at both REPORTS carefully and read them several times looking for the evidence of either an ASYMMETRIC SYLVIAN FISSURE widening or other information that would suggest the presence of a LEUKOENCEPHALOPATHY as either a likely or even possible underlying etiology to whatever the symptoms of declining cognitive issues are with behavioral disturbance.
Here's what the reports are telling me....well, here's what NEITHER report tells me which I would very much like to know....HOW OLD IS THE PERSON being scanned? I am guessing that we are talking about someone in their 60's, 70's, or possibly 80's in age...although if LEUKOENCEPHALOPATHY is the working diagnosis then, I'd choose the lesser of the 3 decades I've listed since usually this family of disorders becomes prominent enough if it develops after birth or childhood so that at least by the 4th or 5th decade people are being taken to the doctor to get scanned and examined for issues related to early onset dementia, parkinsonisms, etc. At any rate, you've got the magic answer so I'll await.
Secondly, the DaT scan states that it is a normal study with normal bilateral radiotracer uptake in both BASAL GANGLIA which is where people typically look when trying to make a diagnosis of a TREMOR due to PARKINSON'S DISEASE. DaT scans have a single FDA approval which is to look at people with tremors who cannot be distinguished between PARKINSON'S DISEASE vs. ESSENTIAL TREMOR. (on the basis of the tremor).
Since the clinical information is mentioning something about an underlying behavioral issue on top of what appears to be a progressive dementing process then, I'm going to guess that the person being scanned has some form of parkinsonisms (which may very well include tremors) but mainly has cognitive or neuropsychiatric changes which are being considered in the context of things such as LEWY BODY DISEASE or FRONTOTEMPORAL LOBE dementia although again DaT scans are really not designed to rule in or out those diagnoses....just for distinguishing tremors of PARKINSON'S DISEASE vs. ESSENTIAL TREMOR. Since the scan is NORMAL then, it is really not helpful to making or excluding anything else from a technical point of view.
In neither study do I see any mention of a widened or asymmetrically widened SYLVIAN (LATERAL FISSURE OR SULCUS) so I'm assuming that's something that was mentioned in the PET scan. When I first read that I think we were going to be talking about a small infant or child who may have been suffering with Glutaric Aciduria which is an error in metabolism and most commonly said to be linked to the presence of WIDENED Sylvian Fissures but in that entity the volume loss and widening of the fissures are BILATERALLY (both sides) so a unilateral finding is a bit odd though it can still happen and perhaps is like that anyway in its earliest onset but at any rate...that's what I thought we were talking about.
The other thing that the MRI scan mentions is a history of a single ACUTE PROGRESSING STROKE.....so did this patient have a STROKE? If so, then, that could explain why one side of the side brain has a widened SYLVIAN FISSURE but this would be due to ENCEPHALOMALACIA (brain atrophy) as opposed to a LEUKOENCEPHALOPATHY which is completely different. Leukoencephalopathy is a famil of disease processes which are characterized by metabolic errors at the cellular level. But the MR scan would suggest a different history. Perhaps, the physician who ordered the scan simply used the term "stroke" to get the scan paid for by the insurance company? Unfortunately, we pull that little trick all the time so that we are given at least a LITTLE PROFESSIONAL autonomy in using tests in the benefit of the patient.
So, the MRI scan really doesn't give me any additional information except to say that this person has age related small vessel ischemic disease as well as age related volume loss changes....neither of these are particularly noteworthy for the purpose of making the long of an asymmetry in the lateral fissures or the presence of a leukoencephalopathy.....or even the stroke that is being called in the history as having occurred. It really doesn't appear that the MRI is even seeing that.....hmmm...perhaps, you are going to explain that one to me as well? HA!
So, in my opinion and based upon present diagnostic/historic information I still do not see where LEUKOENCEPHALOPATHY comes into play....usually that is something that can be SEEN and visually appreciated on an MRI scan...even a CT scan but for some reason the radiologist is keeping us guessing? Or...it ain't there radiographically.
Of course, 2 brothers who have similar symptoms is an interesting clue....but only if you tell what the other 2 brothers have been genetically tested and proven to have???? Or that their scans all look the same and none have been genetically tested?
Hmmm....I'll stop guessing because some of this isn't really hanging....I think I'd need to look at the doctor's notes (better yet the NEUROLOGIST's notes) in order to get a better handle on what they're thinking when ordering these tests as well as understanding the constellation of symptoms that are being presented and evolving in both the patient as well as siblings.
But again, so far, imaging wise? Leukoencephalopathy doesn't jump out as me the way, "dementing illness" (from the MRI) and "PARKINSONISMS" (albeit in the face of a normal DaT scan) do which when I put those 2 together leads me to a diagnostic constellation of Alzheimer's disease (with behavioral manifestations), early onset PD with Alzheimerian features (occurs in about 25% of PD patients), Alzheimer's disease on a background of parkinsonian features (early onset), Lewy Body disease (most likely given the clinical information on the scans), and then, something along the lines of FRONTOTEMPORAL LOBE DEMENTIA (which has a cognitive component that resembles Alzheimer's and is apparent as early on as the 30's...I'm going to guess LESS LIKELY since the DaT scan was obtained).
Once again, if you don't think I'm just Whistling Dixie and have given you some good information to contemplate could you do me a large favor by CLOSING THE QUERY along with some positive feedback and a 5-star rating if you're particularly generous? I am very curious at this mystery and would love to get updated information on the condition if you'd care to drop me a line at www.bit.ly/drdariushsaghafi and let me know how things turn out.
You can always reach me at the above address for this and other questions. I wish you the best with everything and hope our discussion has aided in your understanding of a few concepts related to your concerns.
Regards,
This query required 170 minutes of professional time to research, assimilate, and file a response.
Thank you for the clarifications-- the plot thickens
Detailed Answer:
I've looked at both REPORTS carefully and read them several times looking for the evidence of either an ASYMMETRIC SYLVIAN FISSURE widening or other information that would suggest the presence of a LEUKOENCEPHALOPATHY as either a likely or even possible underlying etiology to whatever the symptoms of declining cognitive issues are with behavioral disturbance.
Here's what the reports are telling me....well, here's what NEITHER report tells me which I would very much like to know....HOW OLD IS THE PERSON being scanned? I am guessing that we are talking about someone in their 60's, 70's, or possibly 80's in age...although if LEUKOENCEPHALOPATHY is the working diagnosis then, I'd choose the lesser of the 3 decades I've listed since usually this family of disorders becomes prominent enough if it develops after birth or childhood so that at least by the 4th or 5th decade people are being taken to the doctor to get scanned and examined for issues related to early onset dementia, parkinsonisms, etc. At any rate, you've got the magic answer so I'll await.
Secondly, the DaT scan states that it is a normal study with normal bilateral radiotracer uptake in both BASAL GANGLIA which is where people typically look when trying to make a diagnosis of a TREMOR due to PARKINSON'S DISEASE. DaT scans have a single FDA approval which is to look at people with tremors who cannot be distinguished between PARKINSON'S DISEASE vs. ESSENTIAL TREMOR. (on the basis of the tremor).
Since the clinical information is mentioning something about an underlying behavioral issue on top of what appears to be a progressive dementing process then, I'm going to guess that the person being scanned has some form of parkinsonisms (which may very well include tremors) but mainly has cognitive or neuropsychiatric changes which are being considered in the context of things such as LEWY BODY DISEASE or FRONTOTEMPORAL LOBE dementia although again DaT scans are really not designed to rule in or out those diagnoses....just for distinguishing tremors of PARKINSON'S DISEASE vs. ESSENTIAL TREMOR. Since the scan is NORMAL then, it is really not helpful to making or excluding anything else from a technical point of view.
In neither study do I see any mention of a widened or asymmetrically widened SYLVIAN (LATERAL FISSURE OR SULCUS) so I'm assuming that's something that was mentioned in the PET scan. When I first read that I think we were going to be talking about a small infant or child who may have been suffering with Glutaric Aciduria which is an error in metabolism and most commonly said to be linked to the presence of WIDENED Sylvian Fissures but in that entity the volume loss and widening of the fissures are BILATERALLY (both sides) so a unilateral finding is a bit odd though it can still happen and perhaps is like that anyway in its earliest onset but at any rate...that's what I thought we were talking about.
The other thing that the MRI scan mentions is a history of a single ACUTE PROGRESSING STROKE.....so did this patient have a STROKE? If so, then, that could explain why one side of the side brain has a widened SYLVIAN FISSURE but this would be due to ENCEPHALOMALACIA (brain atrophy) as opposed to a LEUKOENCEPHALOPATHY which is completely different. Leukoencephalopathy is a famil of disease processes which are characterized by metabolic errors at the cellular level. But the MR scan would suggest a different history. Perhaps, the physician who ordered the scan simply used the term "stroke" to get the scan paid for by the insurance company? Unfortunately, we pull that little trick all the time so that we are given at least a LITTLE PROFESSIONAL autonomy in using tests in the benefit of the patient.
So, the MRI scan really doesn't give me any additional information except to say that this person has age related small vessel ischemic disease as well as age related volume loss changes....neither of these are particularly noteworthy for the purpose of making the long of an asymmetry in the lateral fissures or the presence of a leukoencephalopathy.....or even the stroke that is being called in the history as having occurred. It really doesn't appear that the MRI is even seeing that.....hmmm...perhaps, you are going to explain that one to me as well? HA!
So, in my opinion and based upon present diagnostic/historic information I still do not see where LEUKOENCEPHALOPATHY comes into play....usually that is something that can be SEEN and visually appreciated on an MRI scan...even a CT scan but for some reason the radiologist is keeping us guessing? Or...it ain't there radiographically.
Of course, 2 brothers who have similar symptoms is an interesting clue....but only if you tell what the other 2 brothers have been genetically tested and proven to have???? Or that their scans all look the same and none have been genetically tested?
Hmmm....I'll stop guessing because some of this isn't really hanging....I think I'd need to look at the doctor's notes (better yet the NEUROLOGIST's notes) in order to get a better handle on what they're thinking when ordering these tests as well as understanding the constellation of symptoms that are being presented and evolving in both the patient as well as siblings.
But again, so far, imaging wise? Leukoencephalopathy doesn't jump out as me the way, "dementing illness" (from the MRI) and "PARKINSONISMS" (albeit in the face of a normal DaT scan) do which when I put those 2 together leads me to a diagnostic constellation of Alzheimer's disease (with behavioral manifestations), early onset PD with Alzheimerian features (occurs in about 25% of PD patients), Alzheimer's disease on a background of parkinsonian features (early onset), Lewy Body disease (most likely given the clinical information on the scans), and then, something along the lines of FRONTOTEMPORAL LOBE DEMENTIA (which has a cognitive component that resembles Alzheimer's and is apparent as early on as the 30's...I'm going to guess LESS LIKELY since the DaT scan was obtained).
Once again, if you don't think I'm just Whistling Dixie and have given you some good information to contemplate could you do me a large favor by CLOSING THE QUERY along with some positive feedback and a 5-star rating if you're particularly generous? I am very curious at this mystery and would love to get updated information on the condition if you'd care to drop me a line at www.bit.ly/drdariushsaghafi and let me know how things turn out.
You can always reach me at the above address for this and other questions. I wish you the best with everything and hope our discussion has aided in your understanding of a few concepts related to your concerns.
Regards,
This query required 170 minutes of professional time to research, assimilate, and file a response.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
so let me start by if Im over reaching on this forum please let me know.
YES the plot is very thick lol! Patient DOB is May 11, 1951. We have applied to the UnDiagnosed network three times and have been turned down three times. Mayo clinics response was they feel that they have no other ideas to offer for diagnostic possibilities. recently we have hired a %E2%80%9C concierge%E2%80%9D that%E2%80%99s where the possiblity of luekoencephalothy came from. I have all of dad%E2%80%98s medical records on an online form called picnic health. initially in 08 he was diagnosed with Melas. although after genetic testing that was ruled out. at one point we were told it was possibly see CJD. he had a low positive for 14%E2%80%933-3. that was retested and ruled out. then we went through all the usual Dementias. and now have arrived at no idea what is occurring. very little lab work has ever shown any clinical evidence. He has had persistent low red blood cells, false low positive for 14-3-3, 2008 CSF revealed slightly elevated protein -2018 CFS NORMAL protein, blood sugar is always high, recently there has been discussion as to whether this result is normal or elevated his Adamts13 showed a greater than 10%25 activity level. his EEG varies. 2017 showed mild and cephalopathy 2018 was normal. Dad%E2%80%99s condition seems to be a slow progressive decline with %E2%80%9Cepisodes%E2%80%9D of severe decline. These episodes typically are brought i%E2%80%99m on by some type of stress physical or emotional. He will have periods of delirium severe confusion, it affects his vision and is not always able to recognize familiar faces.
YES the plot is very thick lol! Patient DOB is May 11, 1951. We have applied to the UnDiagnosed network three times and have been turned down three times. Mayo clinics response was they feel that they have no other ideas to offer for diagnostic possibilities. recently we have hired a %E2%80%9C concierge%E2%80%9D that%E2%80%99s where the possiblity of luekoencephalothy came from. I have all of dad%E2%80%98s medical records on an online form called picnic health. initially in 08 he was diagnosed with Melas. although after genetic testing that was ruled out. at one point we were told it was possibly see CJD. he had a low positive for 14%E2%80%933-3. that was retested and ruled out. then we went through all the usual Dementias. and now have arrived at no idea what is occurring. very little lab work has ever shown any clinical evidence. He has had persistent low red blood cells, false low positive for 14-3-3, 2008 CSF revealed slightly elevated protein -2018 CFS NORMAL protein, blood sugar is always high, recently there has been discussion as to whether this result is normal or elevated his Adamts13 showed a greater than 10%25 activity level. his EEG varies. 2017 showed mild and cephalopathy 2018 was normal. Dad%E2%80%99s condition seems to be a slow progressive decline with %E2%80%9Cepisodes%E2%80%9D of severe decline. These episodes typically are brought i%E2%80%99m on by some type of stress physical or emotional. He will have periods of delirium severe confusion, it affects his vision and is not always able to recognize familiar faces.
so let me start by if Im over reaching on this forum please let me know.
YES the plot is very thick lol! Patient DOB is May 11, 1951. We have applied to the UnDiagnosed network three times and have been turned down three times. Mayo clinics response was they feel that they have no other ideas to offer for diagnostic possibilities. recently we have hired a %E2%80%9C concierge%E2%80%9D that%E2%80%99s where the possiblity of luekoencephalothy came from. I have all of dad%E2%80%98s medical records on an online form called picnic health. initially in 08 he was diagnosed with Melas. although after genetic testing that was ruled out. at one point we were told it was possibly see CJD. he had a low positive for 14%E2%80%933-3. that was retested and ruled out. then we went through all the usual Dementias. and now have arrived at no idea what is occurring. very little lab work has ever shown any clinical evidence. He has had persistent low red blood cells, false low positive for 14-3-3, 2008 CSF revealed slightly elevated protein -2018 CFS NORMAL protein, blood sugar is always high, recently there has been discussion as to whether this result is normal or elevated his Adamts13 showed a greater than 10%25 activity level. his EEG varies. 2017 showed mild and cephalopathy 2018 was normal. Dad%E2%80%99s condition seems to be a slow progressive decline with %E2%80%9Cepisodes%E2%80%9D of severe decline. These episodes typically are brought i%E2%80%99m on by some type of stress physical or emotional. He will have periods of delirium severe confusion, it affects his vision and is not always able to recognize familiar faces.
YES the plot is very thick lol! Patient DOB is May 11, 1951. We have applied to the UnDiagnosed network three times and have been turned down three times. Mayo clinics response was they feel that they have no other ideas to offer for diagnostic possibilities. recently we have hired a %E2%80%9C concierge%E2%80%9D that%E2%80%99s where the possiblity of luekoencephalothy came from. I have all of dad%E2%80%98s medical records on an online form called picnic health. initially in 08 he was diagnosed with Melas. although after genetic testing that was ruled out. at one point we were told it was possibly see CJD. he had a low positive for 14%E2%80%933-3. that was retested and ruled out. then we went through all the usual Dementias. and now have arrived at no idea what is occurring. very little lab work has ever shown any clinical evidence. He has had persistent low red blood cells, false low positive for 14-3-3, 2008 CSF revealed slightly elevated protein -2018 CFS NORMAL protein, blood sugar is always high, recently there has been discussion as to whether this result is normal or elevated his Adamts13 showed a greater than 10%25 activity level. his EEG varies. 2017 showed mild and cephalopathy 2018 was normal. Dad%E2%80%99s condition seems to be a slow progressive decline with %E2%80%9Cepisodes%E2%80%9D of severe decline. These episodes typically are brought i%E2%80%99m on by some type of stress physical or emotional. He will have periods of delirium severe confusion, it affects his vision and is not always able to recognize familiar faces.
it appears on my end that it has scrambled some of the message. So let me try to fix where it dropped off. if this is a repeat I apologize.
2008- false positive for CJD
2008- left hospital after 28 days w/diagnosis of Melas. later learned that there was no genetic evidence for this diagnosis.
2009-2011 significant improvement but still a slow gradual cognitive decline with mild episodes. repeated efforts to rule out other causes of dementia
2012- 2015 several small %E2%80%9C episode%E2%80%9D
2016-abnormal EEG
2017- abnormal EEG with mild encephalopathy
2018- hospitalization CFS Revealed no new evidence of disease.
he has consistently had mild low red blood cell count,
recently (although both of his current physicians arent sure if this is a significant finding or not) his ADAMTS13 level was elevated. MRI reveal only small progression with small vessel disease, Random bouts of diarrhea, episodes do trigger headaches and affect his vision, is not always able to recognize the familiar faces.
2008- false positive for CJD
2008- left hospital after 28 days w/diagnosis of Melas. later learned that there was no genetic evidence for this diagnosis.
2009-2011 significant improvement but still a slow gradual cognitive decline with mild episodes. repeated efforts to rule out other causes of dementia
2012- 2015 several small %E2%80%9C episode%E2%80%9D
2016-abnormal EEG
2017- abnormal EEG with mild encephalopathy
2018- hospitalization CFS Revealed no new evidence of disease.
he has consistently had mild low red blood cell count,
recently (although both of his current physicians arent sure if this is a significant finding or not) his ADAMTS13 level was elevated. MRI reveal only small progression with small vessel disease, Random bouts of diarrhea, episodes do trigger headaches and affect his vision, is not always able to recognize the familiar faces.
it appears on my end that it has scrambled some of the message. So let me try to fix where it dropped off. if this is a repeat I apologize.
2008- false positive for CJD
2008- left hospital after 28 days w/diagnosis of Melas. later learned that there was no genetic evidence for this diagnosis.
2009-2011 significant improvement but still a slow gradual cognitive decline with mild episodes. repeated efforts to rule out other causes of dementia
2012- 2015 several small %E2%80%9C episode%E2%80%9D
2016-abnormal EEG
2017- abnormal EEG with mild encephalopathy
2018- hospitalization CFS Revealed no new evidence of disease.
he has consistently had mild low red blood cell count,
recently (although both of his current physicians arent sure if this is a significant finding or not) his ADAMTS13 level was elevated. MRI reveal only small progression with small vessel disease, Random bouts of diarrhea, episodes do trigger headaches and affect his vision, is not always able to recognize the familiar faces.
2008- false positive for CJD
2008- left hospital after 28 days w/diagnosis of Melas. later learned that there was no genetic evidence for this diagnosis.
2009-2011 significant improvement but still a slow gradual cognitive decline with mild episodes. repeated efforts to rule out other causes of dementia
2012- 2015 several small %E2%80%9C episode%E2%80%9D
2016-abnormal EEG
2017- abnormal EEG with mild encephalopathy
2018- hospitalization CFS Revealed no new evidence of disease.
he has consistently had mild low red blood cell count,
recently (although both of his current physicians arent sure if this is a significant finding or not) his ADAMTS13 level was elevated. MRI reveal only small progression with small vessel disease, Random bouts of diarrhea, episodes do trigger headaches and affect his vision, is not always able to recognize the familiar faces.
Brief Answer:
My apologies for this shortened answer...read on
Detailed Answer:
Good morning as I am trying to literally FLY out of XXXXXXX Italy this morning therefore, I had to spend this response by giving you a shortened set of thoughts so that the 24 hr. clock on answering questions on this network didn't run out without a turn around from me (it will be nearly 24 hrs. before I can get back to my computer).
Can you supply me with the following information:
1. Workup on vasculitides (Wegener's granulomatosis and similar things), collagen vascular diseases (Lupus, Psoriatic arthritis, etc) (I'm certain you'll say they've been done) but just have to check all bases. I did see his ADAMTS13 that was done as well.
2. Last vitamin D serum levels and any replacement therapy he's on (IU's/daily etc.)....same thing for B12...last levels and if he's on replacement and same thing for his thyroid panel numbers (as many as they've done FT4, TSH, T3, FT3, microsomal enzymes, etc.)...any sort of adrenal workup with dexamethasone suppression tests, heavy metals testing?
I believe I saw something having to do with porphyrin testing as well so I think that's been covered. How about PCR's in CSF for the usual suspects of HERPES, EBV, ADENOVIRUSES, etc. Has he been out to the plains of XXXXXXX or boating down the Nile in the last 10 years...tropical sorts of diseases, etc.?
And what did you want to say here:
"2012- 2015 several small %E2%80%9C episode%E2%80%9D"? TIA? STARING? CONVULSIVE?
Has a neuro-ophthalmologist done any sort of work with him regarding the "affect his vision" issues...is there optic neuropathy, any bouts of OPTIC NEURITIS (LOSS of vision), any type of cerebellar ataxia to go with this, MRI's with gad of the cervical spine looking for any type of transverse myelitis with the visual vision problems??
Again apologies for such as a whirlwind of questions without explanation but I must get to the airport...but I'll be thinking more on what you've written. I believe that the neurological issues are all part of something syndromic and bigger....which you knew anyways...the question is what's it called and how to stop attacks from happening and further deterioration. I will think more on the leukoencephalopathy.
Do you have the results of his PET scan?
Cheers! See you back across the pond.....
My apologies for this shortened answer...read on
Detailed Answer:
Good morning as I am trying to literally FLY out of XXXXXXX Italy this morning therefore, I had to spend this response by giving you a shortened set of thoughts so that the 24 hr. clock on answering questions on this network didn't run out without a turn around from me (it will be nearly 24 hrs. before I can get back to my computer).
Can you supply me with the following information:
1. Workup on vasculitides (Wegener's granulomatosis and similar things), collagen vascular diseases (Lupus, Psoriatic arthritis, etc) (I'm certain you'll say they've been done) but just have to check all bases. I did see his ADAMTS13 that was done as well.
2. Last vitamin D serum levels and any replacement therapy he's on (IU's/daily etc.)....same thing for B12...last levels and if he's on replacement and same thing for his thyroid panel numbers (as many as they've done FT4, TSH, T3, FT3, microsomal enzymes, etc.)...any sort of adrenal workup with dexamethasone suppression tests, heavy metals testing?
I believe I saw something having to do with porphyrin testing as well so I think that's been covered. How about PCR's in CSF for the usual suspects of HERPES, EBV, ADENOVIRUSES, etc. Has he been out to the plains of XXXXXXX or boating down the Nile in the last 10 years...tropical sorts of diseases, etc.?
And what did you want to say here:
"2012- 2015 several small %E2%80%9C episode%E2%80%9D"? TIA? STARING? CONVULSIVE?
Has a neuro-ophthalmologist done any sort of work with him regarding the "affect his vision" issues...is there optic neuropathy, any bouts of OPTIC NEURITIS (LOSS of vision), any type of cerebellar ataxia to go with this, MRI's with gad of the cervical spine looking for any type of transverse myelitis with the visual vision problems??
Again apologies for such as a whirlwind of questions without explanation but I must get to the airport...but I'll be thinking more on what you've written. I believe that the neurological issues are all part of something syndromic and bigger....which you knew anyways...the question is what's it called and how to stop attacks from happening and further deterioration. I will think more on the leukoencephalopathy.
Do you have the results of his PET scan?
Cheers! See you back across the pond.....
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
My apologies for this shortened answer...read on
Detailed Answer:
Good morning as I am trying to literally FLY out of XXXXXXX Italy this morning therefore, I had to spend this response by giving you a shortened set of thoughts so that the 24 hr. clock on answering questions on this network didn't run out without a turn around from me (it will be nearly 24 hrs. before I can get back to my computer).
Can you supply me with the following information:
1. Workup on vasculitides (Wegener's granulomatosis and similar things), collagen vascular diseases (Lupus, Psoriatic arthritis, etc) (I'm certain you'll say they've been done) but just have to check all bases. I did see his ADAMTS13 that was done as well.
2. Last vitamin D serum levels and any replacement therapy he's on (IU's/daily etc.)....same thing for B12...last levels and if he's on replacement and same thing for his thyroid panel numbers (as many as they've done FT4, TSH, T3, FT3, microsomal enzymes, etc.)...any sort of adrenal workup with dexamethasone suppression tests, heavy metals testing?
I believe I saw something having to do with porphyrin testing as well so I think that's been covered. How about PCR's in CSF for the usual suspects of HERPES, EBV, ADENOVIRUSES, etc. Has he been out to the plains of XXXXXXX or boating down the Nile in the last 10 years...tropical sorts of diseases, etc.?
And what did you want to say here:
"2012- 2015 several small %E2%80%9C episode%E2%80%9D"? TIA? STARING? CONVULSIVE?
Has a neuro-ophthalmologist done any sort of work with him regarding the "affect his vision" issues...is there optic neuropathy, any bouts of OPTIC NEURITIS (LOSS of vision), any type of cerebellar ataxia to go with this, MRI's with gad of the cervical spine looking for any type of transverse myelitis with the visual vision problems??
Again apologies for such as a whirlwind of questions without explanation but I must get to the airport...but I'll be thinking more on what you've written. I believe that the neurological issues are all part of something syndromic and bigger....which you knew anyways...the question is what's it called and how to stop attacks from happening and further deterioration. I will think more on the leukoencephalopathy.
Do you have the results of his PET scan?
Cheers! See you back across the pond.....
My apologies for this shortened answer...read on
Detailed Answer:
Good morning as I am trying to literally FLY out of XXXXXXX Italy this morning therefore, I had to spend this response by giving you a shortened set of thoughts so that the 24 hr. clock on answering questions on this network didn't run out without a turn around from me (it will be nearly 24 hrs. before I can get back to my computer).
Can you supply me with the following information:
1. Workup on vasculitides (Wegener's granulomatosis and similar things), collagen vascular diseases (Lupus, Psoriatic arthritis, etc) (I'm certain you'll say they've been done) but just have to check all bases. I did see his ADAMTS13 that was done as well.
2. Last vitamin D serum levels and any replacement therapy he's on (IU's/daily etc.)....same thing for B12...last levels and if he's on replacement and same thing for his thyroid panel numbers (as many as they've done FT4, TSH, T3, FT3, microsomal enzymes, etc.)...any sort of adrenal workup with dexamethasone suppression tests, heavy metals testing?
I believe I saw something having to do with porphyrin testing as well so I think that's been covered. How about PCR's in CSF for the usual suspects of HERPES, EBV, ADENOVIRUSES, etc. Has he been out to the plains of XXXXXXX or boating down the Nile in the last 10 years...tropical sorts of diseases, etc.?
And what did you want to say here:
"2012- 2015 several small %E2%80%9C episode%E2%80%9D"? TIA? STARING? CONVULSIVE?
Has a neuro-ophthalmologist done any sort of work with him regarding the "affect his vision" issues...is there optic neuropathy, any bouts of OPTIC NEURITIS (LOSS of vision), any type of cerebellar ataxia to go with this, MRI's with gad of the cervical spine looking for any type of transverse myelitis with the visual vision problems??
Again apologies for such as a whirlwind of questions without explanation but I must get to the airport...but I'll be thinking more on what you've written. I believe that the neurological issues are all part of something syndromic and bigger....which you knew anyways...the question is what's it called and how to stop attacks from happening and further deterioration. I will think more on the leukoencephalopathy.
Do you have the results of his PET scan?
Cheers! See you back across the pond.....
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thank you so much for all the information. I have all of Dad%E2%80%98s records uploaded on an online form called picnic health, this was the site that we utilize when applying for the UnDiagnosed network. I thought this might be more informative to look at the record on a timeline. if this is not allowable on the form please let me know and I can upload the individual records. I have attached the records for ALPS and ghe adamts13
DOB 05/11/1951
https:/pic.nc/sh/c2f176d27246ae
DOB 05/11/1951
https:/pic.nc/sh/c2f176d27246ae
Thank you so much for all the information. I have all of Dad%E2%80%98s records uploaded on an online form called picnic health, this was the site that we utilize when applying for the UnDiagnosed network. I thought this might be more informative to look at the record on a timeline. if this is not allowable on the form please let me know and I can upload the individual records. I have attached the records for ALPS and ghe adamts13
DOB 05/11/1951
https:/pic.nc/sh/c2f176d27246ae
DOB 05/11/1951
https:/pic.nc/sh/c2f176d27246ae
I was not able to find any testing done for vitamin D levels. I did find it interesting that you would ask about vitamin D in this situation. Recently I have been reading about the Coimbra protocol. and had been curious if this would relieve any of dads symptoms. if you have any trouble utilizing the picnic help site please let me know or if it%E2%80%99s not allowable on this form I have no problem uploading some of the testing. if this is an overreach for this form also please let me know.
thank you so much for your insight and help
thank you so much for your insight and help
I was not able to find any testing done for vitamin D levels. I did find it interesting that you would ask about vitamin D in this situation. Recently I have been reading about the Coimbra protocol. and had been curious if this would relieve any of dads symptoms. if you have any trouble utilizing the picnic help site please let me know or if it%E2%80%99s not allowable on this form I have no problem uploading some of the testing. if this is an overreach for this form also please let me know.
thank you so much for your insight and help
thank you so much for your insight and help
Brief Answer:
Many thanks for your clarifications
Detailed Answer:
Thank you for those clarifications and uploading of some additional documents. Unfortunately, the PET scan conclusion got cut off in the CONCLUSION/IMPRESSION so I was not able to read the radiologist's impression of what they felt the scan seemed compatible with in terms of a dementia type of differential.
However, allow me to be UNCHARACTERISTICALLY to the point with my GESTALT on what I think your father's clinical picture PLUS the available test results reminds of based upon what I've seen throughout my career and in training when presented with similar cases. These are unusual cases to be sure and usually only seen in academic centers.
First of all, let me say that I did a bit of collegial reading on Dr. Sermas to get an idea of who's been leading the charge and I must say, I believe he is very well credentialed as a neurologist and neuromuscular expert. It looks like he's done a couple of investigations and has been published a couple of times as well which is a good thing. I feel that every physician (even if not a researcher- such as myself) needs to get their name on an article or 2 just for the experience and to understand what the importance of following strict protocols is like as well as the VALIDITY of data and to always be questioning oneself with respect to differential diagnoses, directions to travel with therapeutic decisions based upon EVIDENCE BASED information and so forth. My impression of Dr. Sermas that he very much aligned and practices that philosophy.
He is a bit more EXPERIENCED than I given the timeframe of when he graduated Medical school compared to myself (if you know what I mean-- :) and his photograph suggests a rather sagacious and potentially well rounded individual--- and no I do not believe in reading tea leaves or zodiac sign influences! HAHA...but he looks like a COOL DUDE). I'm impressed by the depth of his workup thus far which is probably not even all of what he has tried for your father since you've indicated there' s much more that I've not seen on the PICNIC website.
FINALLY and VERY IMPORTANTLY for what it's worth, he works and is affiliated with the XXXXXXX and White Memorial Hospital system (or what USED to be called XXXXXXX AND WHITE MEMORIAL HOSPITAL) which is where my father did his surgical residency training when I was a LITTLE kid...5 years old to be exact. We lived at that time in XXXXXXX TX. I had my tonsils out at SWMG (my dad took them out!). I got a red TEXACO FIRECHIEF hat with working microphone in the helmet which is very cool and a LIONEL trainset. I also remember being able to withstand the attack of the RED ANTS of XXXXXXX while I and little girl neighbor friend were sitting in a sand box area outside our apartments. I recall my mother running out when the little girl started to scream to find us both with these ants on us and apparently they were BITERS! I don't remember that but I do remember feeling so "grown up" since I didn't yell and cry as she did! LOLOLOL!
Soooo, I have a great deal of respect for anyone who practice or trained at that very well known teaching hospital and puts forth the type of workup he's put your dad through. I am wondering about any other input that Dr. Sermas has gotten on this case from specialities such as ID, RHEUMATOLOGY, NEUROIMMUNOLOGY, NEUROVIROLOGY, EPILEPTOLOGY?
Back to my UNCHARACTERISTICALLY brief impressions when I read the story of your dad with available test results.
1. VIRAL ENCEPHALITIS (acute episode 2008) that occurred some time in 2008 when started happening. Could've been an acute change in mental status, personality from one day to the next. The fact that his scans at that time showed brain swelling without any evidence of a stroke is what leads to that conclusion. It does not sound as if it was a HERPES ENCEPHALOPATHY since that usually is noted by MRI and CT of the head in the form of petechial and focal hemorrhaging which can then, be seen as being reflected in a person's reduced and/or waxing/waning mental status. EEG's demonstrates sharp waves that are focal in nature referred to as PLEDS (Periodic Lateralizing EPILEPTIFORM DISCHARGES).
Possible agents: ADENOVIRUS, EBV, HERPES
2. CNS VASCULITIS (as part of something more syndromic such as Lupus cerebritis, Wegener's granulomatosis, however, no history of skin rashes, diseases, or evidence of imaging studies of a vasculitic type of picture (though I've not seen any MRA or any 4 vessel angiograms of the brain). Along with vasculitis should be a differrential of CNS SARCOIDOSIS but again, not very much support radiographically or other testing measures that I've seen.
3. MELAS/LEUKOENCEPHALOPATHY. You've already said that MELAS has been ruled out and that's reasonable but good that it was in the differential. What I'm not entirely convinced on with LEUKOENCEPHALOPATHY is the fact that for the vast majority of the most common ones the MRI demonstration of white matter changes is usually not SUBTLE as are the changes seen in your dad's case. I would expect any one of the most common LEUKOENCEPHALOPATHIES to have demonstrated something more robust and more classical within the last 10 years.
4. PRION disease- Highly unlikely simply based on the findings of SWELLING and INFLAMMATORY changes as opposed to straight away NEURODEGNERATION resulting in SPONGIFORM changes of the brain which almost universally lead to worst outcomes (i.e. death and continued rapid cognitive decline) within months up to a maximum of about 2-5 years.
I also have some commentary on the COIMBA protocol that you've read about that I'll reserve for our next message because it's a more involved explanation.
I was also wondering about Vitamin B12, pyridoxine, and thyroid studies (FT4 and TSH mostly) in general which I didn't find in the labs you sent.
Also, I keep getting things that I can't transcribe because of the symbols.
1. if you have any trouble utilizing the picnic help site please let me know or if it%E2%80%99s
2. 2012- 2015 several small %E2%80%9C episode%E2%80%9D
Many thanks for your clarifications
Detailed Answer:
Thank you for those clarifications and uploading of some additional documents. Unfortunately, the PET scan conclusion got cut off in the CONCLUSION/IMPRESSION so I was not able to read the radiologist's impression of what they felt the scan seemed compatible with in terms of a dementia type of differential.
However, allow me to be UNCHARACTERISTICALLY to the point with my GESTALT on what I think your father's clinical picture PLUS the available test results reminds of based upon what I've seen throughout my career and in training when presented with similar cases. These are unusual cases to be sure and usually only seen in academic centers.
First of all, let me say that I did a bit of collegial reading on Dr. Sermas to get an idea of who's been leading the charge and I must say, I believe he is very well credentialed as a neurologist and neuromuscular expert. It looks like he's done a couple of investigations and has been published a couple of times as well which is a good thing. I feel that every physician (even if not a researcher- such as myself) needs to get their name on an article or 2 just for the experience and to understand what the importance of following strict protocols is like as well as the VALIDITY of data and to always be questioning oneself with respect to differential diagnoses, directions to travel with therapeutic decisions based upon EVIDENCE BASED information and so forth. My impression of Dr. Sermas that he very much aligned and practices that philosophy.
He is a bit more EXPERIENCED than I given the timeframe of when he graduated Medical school compared to myself (if you know what I mean-- :) and his photograph suggests a rather sagacious and potentially well rounded individual--- and no I do not believe in reading tea leaves or zodiac sign influences! HAHA...but he looks like a COOL DUDE). I'm impressed by the depth of his workup thus far which is probably not even all of what he has tried for your father since you've indicated there' s much more that I've not seen on the PICNIC website.
FINALLY and VERY IMPORTANTLY for what it's worth, he works and is affiliated with the XXXXXXX and White Memorial Hospital system (or what USED to be called XXXXXXX AND WHITE MEMORIAL HOSPITAL) which is where my father did his surgical residency training when I was a LITTLE kid...5 years old to be exact. We lived at that time in XXXXXXX TX. I had my tonsils out at SWMG (my dad took them out!). I got a red TEXACO FIRECHIEF hat with working microphone in the helmet which is very cool and a LIONEL trainset. I also remember being able to withstand the attack of the RED ANTS of XXXXXXX while I and little girl neighbor friend were sitting in a sand box area outside our apartments. I recall my mother running out when the little girl started to scream to find us both with these ants on us and apparently they were BITERS! I don't remember that but I do remember feeling so "grown up" since I didn't yell and cry as she did! LOLOLOL!
Soooo, I have a great deal of respect for anyone who practice or trained at that very well known teaching hospital and puts forth the type of workup he's put your dad through. I am wondering about any other input that Dr. Sermas has gotten on this case from specialities such as ID, RHEUMATOLOGY, NEUROIMMUNOLOGY, NEUROVIROLOGY, EPILEPTOLOGY?
Back to my UNCHARACTERISTICALLY brief impressions when I read the story of your dad with available test results.
1. VIRAL ENCEPHALITIS (acute episode 2008) that occurred some time in 2008 when started happening. Could've been an acute change in mental status, personality from one day to the next. The fact that his scans at that time showed brain swelling without any evidence of a stroke is what leads to that conclusion. It does not sound as if it was a HERPES ENCEPHALOPATHY since that usually is noted by MRI and CT of the head in the form of petechial and focal hemorrhaging which can then, be seen as being reflected in a person's reduced and/or waxing/waning mental status. EEG's demonstrates sharp waves that are focal in nature referred to as PLEDS (Periodic Lateralizing EPILEPTIFORM DISCHARGES).
Possible agents: ADENOVIRUS, EBV, HERPES
2. CNS VASCULITIS (as part of something more syndromic such as Lupus cerebritis, Wegener's granulomatosis, however, no history of skin rashes, diseases, or evidence of imaging studies of a vasculitic type of picture (though I've not seen any MRA or any 4 vessel angiograms of the brain). Along with vasculitis should be a differrential of CNS SARCOIDOSIS but again, not very much support radiographically or other testing measures that I've seen.
3. MELAS/LEUKOENCEPHALOPATHY. You've already said that MELAS has been ruled out and that's reasonable but good that it was in the differential. What I'm not entirely convinced on with LEUKOENCEPHALOPATHY is the fact that for the vast majority of the most common ones the MRI demonstration of white matter changes is usually not SUBTLE as are the changes seen in your dad's case. I would expect any one of the most common LEUKOENCEPHALOPATHIES to have demonstrated something more robust and more classical within the last 10 years.
4. PRION disease- Highly unlikely simply based on the findings of SWELLING and INFLAMMATORY changes as opposed to straight away NEURODEGNERATION resulting in SPONGIFORM changes of the brain which almost universally lead to worst outcomes (i.e. death and continued rapid cognitive decline) within months up to a maximum of about 2-5 years.
I also have some commentary on the COIMBA protocol that you've read about that I'll reserve for our next message because it's a more involved explanation.
I was also wondering about Vitamin B12, pyridoxine, and thyroid studies (FT4 and TSH mostly) in general which I didn't find in the labs you sent.
Also, I keep getting things that I can't transcribe because of the symbols.
1. if you have any trouble utilizing the picnic help site please let me know or if it%E2%80%99s
2. 2012- 2015 several small %E2%80%9C episode%E2%80%9D
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
Many thanks for your clarifications
Detailed Answer:
Thank you for those clarifications and uploading of some additional documents. Unfortunately, the PET scan conclusion got cut off in the CONCLUSION/IMPRESSION so I was not able to read the radiologist's impression of what they felt the scan seemed compatible with in terms of a dementia type of differential.
However, allow me to be UNCHARACTERISTICALLY to the point with my GESTALT on what I think your father's clinical picture PLUS the available test results reminds of based upon what I've seen throughout my career and in training when presented with similar cases. These are unusual cases to be sure and usually only seen in academic centers.
First of all, let me say that I did a bit of collegial reading on Dr. Sermas to get an idea of who's been leading the charge and I must say, I believe he is very well credentialed as a neurologist and neuromuscular expert. It looks like he's done a couple of investigations and has been published a couple of times as well which is a good thing. I feel that every physician (even if not a researcher- such as myself) needs to get their name on an article or 2 just for the experience and to understand what the importance of following strict protocols is like as well as the VALIDITY of data and to always be questioning oneself with respect to differential diagnoses, directions to travel with therapeutic decisions based upon EVIDENCE BASED information and so forth. My impression of Dr. Sermas that he very much aligned and practices that philosophy.
He is a bit more EXPERIENCED than I given the timeframe of when he graduated Medical school compared to myself (if you know what I mean-- :) and his photograph suggests a rather sagacious and potentially well rounded individual--- and no I do not believe in reading tea leaves or zodiac sign influences! HAHA...but he looks like a COOL DUDE). I'm impressed by the depth of his workup thus far which is probably not even all of what he has tried for your father since you've indicated there' s much more that I've not seen on the PICNIC website.
FINALLY and VERY IMPORTANTLY for what it's worth, he works and is affiliated with the XXXXXXX and White Memorial Hospital system (or what USED to be called XXXXXXX AND WHITE MEMORIAL HOSPITAL) which is where my father did his surgical residency training when I was a LITTLE kid...5 years old to be exact. We lived at that time in XXXXXXX TX. I had my tonsils out at SWMG (my dad took them out!). I got a red TEXACO FIRECHIEF hat with working microphone in the helmet which is very cool and a LIONEL trainset. I also remember being able to withstand the attack of the RED ANTS of XXXXXXX while I and little girl neighbor friend were sitting in a sand box area outside our apartments. I recall my mother running out when the little girl started to scream to find us both with these ants on us and apparently they were BITERS! I don't remember that but I do remember feeling so "grown up" since I didn't yell and cry as she did! LOLOLOL!
Soooo, I have a great deal of respect for anyone who practice or trained at that very well known teaching hospital and puts forth the type of workup he's put your dad through. I am wondering about any other input that Dr. Sermas has gotten on this case from specialities such as ID, RHEUMATOLOGY, NEUROIMMUNOLOGY, NEUROVIROLOGY, EPILEPTOLOGY?
Back to my UNCHARACTERISTICALLY brief impressions when I read the story of your dad with available test results.
1. VIRAL ENCEPHALITIS (acute episode 2008) that occurred some time in 2008 when started happening. Could've been an acute change in mental status, personality from one day to the next. The fact that his scans at that time showed brain swelling without any evidence of a stroke is what leads to that conclusion. It does not sound as if it was a HERPES ENCEPHALOPATHY since that usually is noted by MRI and CT of the head in the form of petechial and focal hemorrhaging which can then, be seen as being reflected in a person's reduced and/or waxing/waning mental status. EEG's demonstrates sharp waves that are focal in nature referred to as PLEDS (Periodic Lateralizing EPILEPTIFORM DISCHARGES).
Possible agents: ADENOVIRUS, EBV, HERPES
2. CNS VASCULITIS (as part of something more syndromic such as Lupus cerebritis, Wegener's granulomatosis, however, no history of skin rashes, diseases, or evidence of imaging studies of a vasculitic type of picture (though I've not seen any MRA or any 4 vessel angiograms of the brain). Along with vasculitis should be a differrential of CNS SARCOIDOSIS but again, not very much support radiographically or other testing measures that I've seen.
3. MELAS/LEUKOENCEPHALOPATHY. You've already said that MELAS has been ruled out and that's reasonable but good that it was in the differential. What I'm not entirely convinced on with LEUKOENCEPHALOPATHY is the fact that for the vast majority of the most common ones the MRI demonstration of white matter changes is usually not SUBTLE as are the changes seen in your dad's case. I would expect any one of the most common LEUKOENCEPHALOPATHIES to have demonstrated something more robust and more classical within the last 10 years.
4. PRION disease- Highly unlikely simply based on the findings of SWELLING and INFLAMMATORY changes as opposed to straight away NEURODEGNERATION resulting in SPONGIFORM changes of the brain which almost universally lead to worst outcomes (i.e. death and continued rapid cognitive decline) within months up to a maximum of about 2-5 years.
I also have some commentary on the COIMBA protocol that you've read about that I'll reserve for our next message because it's a more involved explanation.
I was also wondering about Vitamin B12, pyridoxine, and thyroid studies (FT4 and TSH mostly) in general which I didn't find in the labs you sent.
Also, I keep getting things that I can't transcribe because of the symbols.
1. if you have any trouble utilizing the picnic help site please let me know or if it%E2%80%99s
2. 2012- 2015 several small %E2%80%9C episode%E2%80%9D
Many thanks for your clarifications
Detailed Answer:
Thank you for those clarifications and uploading of some additional documents. Unfortunately, the PET scan conclusion got cut off in the CONCLUSION/IMPRESSION so I was not able to read the radiologist's impression of what they felt the scan seemed compatible with in terms of a dementia type of differential.
However, allow me to be UNCHARACTERISTICALLY to the point with my GESTALT on what I think your father's clinical picture PLUS the available test results reminds of based upon what I've seen throughout my career and in training when presented with similar cases. These are unusual cases to be sure and usually only seen in academic centers.
First of all, let me say that I did a bit of collegial reading on Dr. Sermas to get an idea of who's been leading the charge and I must say, I believe he is very well credentialed as a neurologist and neuromuscular expert. It looks like he's done a couple of investigations and has been published a couple of times as well which is a good thing. I feel that every physician (even if not a researcher- such as myself) needs to get their name on an article or 2 just for the experience and to understand what the importance of following strict protocols is like as well as the VALIDITY of data and to always be questioning oneself with respect to differential diagnoses, directions to travel with therapeutic decisions based upon EVIDENCE BASED information and so forth. My impression of Dr. Sermas that he very much aligned and practices that philosophy.
He is a bit more EXPERIENCED than I given the timeframe of when he graduated Medical school compared to myself (if you know what I mean-- :) and his photograph suggests a rather sagacious and potentially well rounded individual--- and no I do not believe in reading tea leaves or zodiac sign influences! HAHA...but he looks like a COOL DUDE). I'm impressed by the depth of his workup thus far which is probably not even all of what he has tried for your father since you've indicated there' s much more that I've not seen on the PICNIC website.
FINALLY and VERY IMPORTANTLY for what it's worth, he works and is affiliated with the XXXXXXX and White Memorial Hospital system (or what USED to be called XXXXXXX AND WHITE MEMORIAL HOSPITAL) which is where my father did his surgical residency training when I was a LITTLE kid...5 years old to be exact. We lived at that time in XXXXXXX TX. I had my tonsils out at SWMG (my dad took them out!). I got a red TEXACO FIRECHIEF hat with working microphone in the helmet which is very cool and a LIONEL trainset. I also remember being able to withstand the attack of the RED ANTS of XXXXXXX while I and little girl neighbor friend were sitting in a sand box area outside our apartments. I recall my mother running out when the little girl started to scream to find us both with these ants on us and apparently they were BITERS! I don't remember that but I do remember feeling so "grown up" since I didn't yell and cry as she did! LOLOLOL!
Soooo, I have a great deal of respect for anyone who practice or trained at that very well known teaching hospital and puts forth the type of workup he's put your dad through. I am wondering about any other input that Dr. Sermas has gotten on this case from specialities such as ID, RHEUMATOLOGY, NEUROIMMUNOLOGY, NEUROVIROLOGY, EPILEPTOLOGY?
Back to my UNCHARACTERISTICALLY brief impressions when I read the story of your dad with available test results.
1. VIRAL ENCEPHALITIS (acute episode 2008) that occurred some time in 2008 when started happening. Could've been an acute change in mental status, personality from one day to the next. The fact that his scans at that time showed brain swelling without any evidence of a stroke is what leads to that conclusion. It does not sound as if it was a HERPES ENCEPHALOPATHY since that usually is noted by MRI and CT of the head in the form of petechial and focal hemorrhaging which can then, be seen as being reflected in a person's reduced and/or waxing/waning mental status. EEG's demonstrates sharp waves that are focal in nature referred to as PLEDS (Periodic Lateralizing EPILEPTIFORM DISCHARGES).
Possible agents: ADENOVIRUS, EBV, HERPES
2. CNS VASCULITIS (as part of something more syndromic such as Lupus cerebritis, Wegener's granulomatosis, however, no history of skin rashes, diseases, or evidence of imaging studies of a vasculitic type of picture (though I've not seen any MRA or any 4 vessel angiograms of the brain). Along with vasculitis should be a differrential of CNS SARCOIDOSIS but again, not very much support radiographically or other testing measures that I've seen.
3. MELAS/LEUKOENCEPHALOPATHY. You've already said that MELAS has been ruled out and that's reasonable but good that it was in the differential. What I'm not entirely convinced on with LEUKOENCEPHALOPATHY is the fact that for the vast majority of the most common ones the MRI demonstration of white matter changes is usually not SUBTLE as are the changes seen in your dad's case. I would expect any one of the most common LEUKOENCEPHALOPATHIES to have demonstrated something more robust and more classical within the last 10 years.
4. PRION disease- Highly unlikely simply based on the findings of SWELLING and INFLAMMATORY changes as opposed to straight away NEURODEGNERATION resulting in SPONGIFORM changes of the brain which almost universally lead to worst outcomes (i.e. death and continued rapid cognitive decline) within months up to a maximum of about 2-5 years.
I also have some commentary on the COIMBA protocol that you've read about that I'll reserve for our next message because it's a more involved explanation.
I was also wondering about Vitamin B12, pyridoxine, and thyroid studies (FT4 and TSH mostly) in general which I didn't find in the labs you sent.
Also, I keep getting things that I can't transcribe because of the symbols.
1. if you have any trouble utilizing the picnic help site please let me know or if it%E2%80%99s
2. 2012- 2015 several small %E2%80%9C episode%E2%80%9D
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
First in for most I must say you were very grown-up. FIRE ANTS still make me cry out.lol%0D
My sister had surgery at that same hospital must%E2%80%99ve been sometime in the early %E2%80%9880s. She had a goiter removed from her thyroid. I remember being so envious of her vendors this made her the most beautiful handkerchief I have ever seen. Hehe. %0D
Dr Sermus has been very helpful in maintaining dad. We just recently taken guardianship of him with in the last few years. That is an allowed us to start seeking answers for him again. Dad is the only one who doesn%E2%80%99t know he sick. Good for him bad for us ha ha. Dr.Sermus was able to tell us that dad is still in a chronic state of encephalopathy. That was something we did not know. Unfortunately we have reached an impasse with him. He feels like he has done all but he can and attempts to diagnose him. That led us to seek out Dr. Ralphel Schiffman With Baylor XXXXXXX and white undiagnosed. He is a very accomplished position. Has written many papers in his field. He was very sure that this Hemiplegic migraines. Unfortunately after genetic studies that wasn%E2%80%99t the answer for him. So we are still at a loss. By looking at the scans done it doesn%E2%80%99t look like there%E2%80%99s been much damage. Dad has lost 10 years because of this disease. I am in hopes that we can find an answer so that he might have a few peaceful years left. With that being said I would like to ask if you were available for private consult? %0D
My sister had surgery at that same hospital must%E2%80%99ve been sometime in the early %E2%80%9880s. She had a goiter removed from her thyroid. I remember being so envious of her vendors this made her the most beautiful handkerchief I have ever seen. Hehe. %0D
Dr Sermus has been very helpful in maintaining dad. We just recently taken guardianship of him with in the last few years. That is an allowed us to start seeking answers for him again. Dad is the only one who doesn%E2%80%99t know he sick. Good for him bad for us ha ha. Dr.Sermus was able to tell us that dad is still in a chronic state of encephalopathy. That was something we did not know. Unfortunately we have reached an impasse with him. He feels like he has done all but he can and attempts to diagnose him. That led us to seek out Dr. Ralphel Schiffman With Baylor XXXXXXX and white undiagnosed. He is a very accomplished position. Has written many papers in his field. He was very sure that this Hemiplegic migraines. Unfortunately after genetic studies that wasn%E2%80%99t the answer for him. So we are still at a loss. By looking at the scans done it doesn%E2%80%99t look like there%E2%80%99s been much damage. Dad has lost 10 years because of this disease. I am in hopes that we can find an answer so that he might have a few peaceful years left. With that being said I would like to ask if you were available for private consult? %0D
First in for most I must say you were very grown-up. FIRE ANTS still make me cry out.lol%0D
My sister had surgery at that same hospital must%E2%80%99ve been sometime in the early %E2%80%9880s. She had a goiter removed from her thyroid. I remember being so envious of her vendors this made her the most beautiful handkerchief I have ever seen. Hehe. %0D
Dr Sermus has been very helpful in maintaining dad. We just recently taken guardianship of him with in the last few years. That is an allowed us to start seeking answers for him again. Dad is the only one who doesn%E2%80%99t know he sick. Good for him bad for us ha ha. Dr.Sermus was able to tell us that dad is still in a chronic state of encephalopathy. That was something we did not know. Unfortunately we have reached an impasse with him. He feels like he has done all but he can and attempts to diagnose him. That led us to seek out Dr. Ralphel Schiffman With Baylor XXXXXXX and white undiagnosed. He is a very accomplished position. Has written many papers in his field. He was very sure that this Hemiplegic migraines. Unfortunately after genetic studies that wasn%E2%80%99t the answer for him. So we are still at a loss. By looking at the scans done it doesn%E2%80%99t look like there%E2%80%99s been much damage. Dad has lost 10 years because of this disease. I am in hopes that we can find an answer so that he might have a few peaceful years left. With that being said I would like to ask if you were available for private consult? %0D
My sister had surgery at that same hospital must%E2%80%99ve been sometime in the early %E2%80%9880s. She had a goiter removed from her thyroid. I remember being so envious of her vendors this made her the most beautiful handkerchief I have ever seen. Hehe. %0D
Dr Sermus has been very helpful in maintaining dad. We just recently taken guardianship of him with in the last few years. That is an allowed us to start seeking answers for him again. Dad is the only one who doesn%E2%80%99t know he sick. Good for him bad for us ha ha. Dr.Sermus was able to tell us that dad is still in a chronic state of encephalopathy. That was something we did not know. Unfortunately we have reached an impasse with him. He feels like he has done all but he can and attempts to diagnose him. That led us to seek out Dr. Ralphel Schiffman With Baylor XXXXXXX and white undiagnosed. He is a very accomplished position. Has written many papers in his field. He was very sure that this Hemiplegic migraines. Unfortunately after genetic studies that wasn%E2%80%99t the answer for him. So we are still at a loss. By looking at the scans done it doesn%E2%80%99t look like there%E2%80%99s been much damage. Dad has lost 10 years because of this disease. I am in hopes that we can find an answer so that he might have a few peaceful years left. With that being said I would like to ask if you were available for private consult? %0D
Brief Answer:
You are clearly smart enough not to sit in sandboxes with RED ANTS
Detailed Answer:
Screaming out when seeing FIRE ANTS is nothing to be ashamed of my dear.....you are only helping your fellow man....at least you have more sense than to sit in the middle of them as I did and just watch them kind of crawling over you without doing anything! LOL... Isn't that hilarious what your sister and I share in terms of having had surgery at S&W? I should tell you another interesting story which is a teammate of mine on the rugby team I play for who is a little less than 30 years my junior was born at the same hospital I was in New Jersey! And the only reason we found out was because somehow our conversation came around to where we had each been born and it turned out to be NJ which was cool but not extraordinary until I challenged him by saying that I bet I was born in the hospital with the most hilarious name in the World....MIDDLESEX MEMORIAL...and I thought I'd stump him with that...but then, he retorted....."Which got its name changed to the XXXXXXX Wood XXXXXXX Foundation....and THAT was the hospital I was born in!!" LOL!
As a headache sub-specialist I'm curious about the diagnosis of HM's....I don't think I recall your saying that your dad suffered or suffers from migraines. Do these headaches coincide in time with his being more fuzzy/confused or with any other symptoms of his generalized illness he is having? And so, my understanding from the comment Dr. Sermas made is that your father does not really exit from where he's at cognitively at present to any HIGHER state of mental functioning...is that correct? Has he been treated with antiepileptic medications empirically on the basis of the presence of the epileptiform discharges in the frontal lobes? The most common causes of those frontal discharges would either be an INFECTOUS process, a STRUCTURAL LESION, or a METABOLIC derangement of the brain.
BTW, I am familiar with papers of Dr. Schiffman having to do mainly with neurometabolic disorders such as Gaucher's disease and other lysosomal storage diseases. He is primarily a pediatric neurologist with the sub-specialty ...but by all means unless there is an ADULT neurologist who is also into the neurometabolic tract as Dr. Schiffman I don't see any problem with Dr. Schiffman being involved. He's likely one of the most knowledgeable people in the department on neurometabolic disorders in both pediatric as well adult patients.
The thing that I don't quite like is the MRI finding of cerebral swelling which I believe was somewhat FOCAL. That to me is nearly always the SMOKING GUN necessary to get suspicious for an infectious process. I didn't see any evidence in any scans to this point of petechial hemorrhages or any other type of intracranial bleeding in a focal area which is the sine qua non of a herpetic infection until proven otherwise. Dr. Schiffman is not a headache sub-specialist as far as know since I go to all the XXXXXXX Headache Society meetings and have never seen him there....therefore, I'd like to know what criteria he applied to make the clinical diagnosis of this disorder in your father.
I also wanted to just briefly comment on your reading of the Coimbra protocol for MEGADOSE vitamin D therapy. I have some significant reservations on the use and implementation of this protocol which if you would like to move toward my going into more depth by privately consulting on your father I can give you the details on....I am a big proponent and big fan of replenishing and replacing low Vitamin D levels which seems to be present in virtually EVERYBODY (young and old, normal or infirmed...), however, I have seen what happens to patients when they get overdosed on Vitamin D which can happen at doses significant lower than the Coimbra protocol calls for....however, as I said, this would be something to explore in more detail so that I can share my reasons for skepticism on this protocol. I do not know if it would help your father but I don't see a downside to making sure he well loaded with adequate target. I do this FOR VIRTUALLY ALL my neurology patients including those with headache MS, as well as several patients I currently have who suffer from autoimmune diseases such as PSORIASIS, PSORIATIC ARTHRITIS, LUPUS, and AUTOIMMUNE AUTONOMIC DYSFUNCTION who suffer cognitive symptoms on a waxing and waning basis. But I do not see the need to use the MEGADOSES that Dr. Coimbra promotes based on the fact that he does not have his method in any type of peer reviewed publication that can then, be available for comment and criticism by plausible and capable colleagues who could potentially improve the concept. Again, I totally support the use of Vitamin D in supplemental form for someone such as your father but I do not feel that the MEGADOSE amounts would offer any better clinical effects than the higher doses necessary to hit the serum target levels that I typically feel represent more rational ranges than the traditional and standard lab values which derive more from the RDA (Recommended Daily Amount) tables first published in 1941.
If you would like to discuss a potential private consultation for your father please call us at Parma Neurology at your earliest convenience and I will have someone from the office go over initial details on how we perform such consults (440.842.3816).
I look forward to the possibility of helping your father and trying to attack this problem in the most efficient and innovative way possible.
In the mean time if I have provided any bit more of useful information to help open up a few more doors to managing your dad...could you consider CLOSING THE PRESENT QUERY along with some words of positive note and a 5-star rating if you're of the opinion the discussions have been worthy. No matter what your decision may be on going forward or not with a private consultation I am highly interested in this mystery and would love to get updated information on his condition at www.bit.ly/drdariushsaghafi.
Cheers!
This query has to this point required 345 minutes of professional time to research, assimilate, and file a response
You are clearly smart enough not to sit in sandboxes with RED ANTS
Detailed Answer:
Screaming out when seeing FIRE ANTS is nothing to be ashamed of my dear.....you are only helping your fellow man....at least you have more sense than to sit in the middle of them as I did and just watch them kind of crawling over you without doing anything! LOL... Isn't that hilarious what your sister and I share in terms of having had surgery at S&W? I should tell you another interesting story which is a teammate of mine on the rugby team I play for who is a little less than 30 years my junior was born at the same hospital I was in New Jersey! And the only reason we found out was because somehow our conversation came around to where we had each been born and it turned out to be NJ which was cool but not extraordinary until I challenged him by saying that I bet I was born in the hospital with the most hilarious name in the World....MIDDLESEX MEMORIAL...and I thought I'd stump him with that...but then, he retorted....."Which got its name changed to the XXXXXXX Wood XXXXXXX Foundation....and THAT was the hospital I was born in!!" LOL!
As a headache sub-specialist I'm curious about the diagnosis of HM's....I don't think I recall your saying that your dad suffered or suffers from migraines. Do these headaches coincide in time with his being more fuzzy/confused or with any other symptoms of his generalized illness he is having? And so, my understanding from the comment Dr. Sermas made is that your father does not really exit from where he's at cognitively at present to any HIGHER state of mental functioning...is that correct? Has he been treated with antiepileptic medications empirically on the basis of the presence of the epileptiform discharges in the frontal lobes? The most common causes of those frontal discharges would either be an INFECTOUS process, a STRUCTURAL LESION, or a METABOLIC derangement of the brain.
BTW, I am familiar with papers of Dr. Schiffman having to do mainly with neurometabolic disorders such as Gaucher's disease and other lysosomal storage diseases. He is primarily a pediatric neurologist with the sub-specialty ...but by all means unless there is an ADULT neurologist who is also into the neurometabolic tract as Dr. Schiffman I don't see any problem with Dr. Schiffman being involved. He's likely one of the most knowledgeable people in the department on neurometabolic disorders in both pediatric as well adult patients.
The thing that I don't quite like is the MRI finding of cerebral swelling which I believe was somewhat FOCAL. That to me is nearly always the SMOKING GUN necessary to get suspicious for an infectious process. I didn't see any evidence in any scans to this point of petechial hemorrhages or any other type of intracranial bleeding in a focal area which is the sine qua non of a herpetic infection until proven otherwise. Dr. Schiffman is not a headache sub-specialist as far as know since I go to all the XXXXXXX Headache Society meetings and have never seen him there....therefore, I'd like to know what criteria he applied to make the clinical diagnosis of this disorder in your father.
I also wanted to just briefly comment on your reading of the Coimbra protocol for MEGADOSE vitamin D therapy. I have some significant reservations on the use and implementation of this protocol which if you would like to move toward my going into more depth by privately consulting on your father I can give you the details on....I am a big proponent and big fan of replenishing and replacing low Vitamin D levels which seems to be present in virtually EVERYBODY (young and old, normal or infirmed...), however, I have seen what happens to patients when they get overdosed on Vitamin D which can happen at doses significant lower than the Coimbra protocol calls for....however, as I said, this would be something to explore in more detail so that I can share my reasons for skepticism on this protocol. I do not know if it would help your father but I don't see a downside to making sure he well loaded with adequate target. I do this FOR VIRTUALLY ALL my neurology patients including those with headache MS, as well as several patients I currently have who suffer from autoimmune diseases such as PSORIASIS, PSORIATIC ARTHRITIS, LUPUS, and AUTOIMMUNE AUTONOMIC DYSFUNCTION who suffer cognitive symptoms on a waxing and waning basis. But I do not see the need to use the MEGADOSES that Dr. Coimbra promotes based on the fact that he does not have his method in any type of peer reviewed publication that can then, be available for comment and criticism by plausible and capable colleagues who could potentially improve the concept. Again, I totally support the use of Vitamin D in supplemental form for someone such as your father but I do not feel that the MEGADOSE amounts would offer any better clinical effects than the higher doses necessary to hit the serum target levels that I typically feel represent more rational ranges than the traditional and standard lab values which derive more from the RDA (Recommended Daily Amount) tables first published in 1941.
If you would like to discuss a potential private consultation for your father please call us at Parma Neurology at your earliest convenience and I will have someone from the office go over initial details on how we perform such consults (440.842.3816).
I look forward to the possibility of helping your father and trying to attack this problem in the most efficient and innovative way possible.
In the mean time if I have provided any bit more of useful information to help open up a few more doors to managing your dad...could you consider CLOSING THE PRESENT QUERY along with some words of positive note and a 5-star rating if you're of the opinion the discussions have been worthy. No matter what your decision may be on going forward or not with a private consultation I am highly interested in this mystery and would love to get updated information on his condition at www.bit.ly/drdariushsaghafi.
Cheers!
This query has to this point required 345 minutes of professional time to research, assimilate, and file a response
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
You are clearly smart enough not to sit in sandboxes with RED ANTS
Detailed Answer:
Screaming out when seeing FIRE ANTS is nothing to be ashamed of my dear.....you are only helping your fellow man....at least you have more sense than to sit in the middle of them as I did and just watch them kind of crawling over you without doing anything! LOL... Isn't that hilarious what your sister and I share in terms of having had surgery at S&W? I should tell you another interesting story which is a teammate of mine on the rugby team I play for who is a little less than 30 years my junior was born at the same hospital I was in New Jersey! And the only reason we found out was because somehow our conversation came around to where we had each been born and it turned out to be NJ which was cool but not extraordinary until I challenged him by saying that I bet I was born in the hospital with the most hilarious name in the World....MIDDLESEX MEMORIAL...and I thought I'd stump him with that...but then, he retorted....."Which got its name changed to the XXXXXXX Wood XXXXXXX Foundation....and THAT was the hospital I was born in!!" LOL!
As a headache sub-specialist I'm curious about the diagnosis of HM's....I don't think I recall your saying that your dad suffered or suffers from migraines. Do these headaches coincide in time with his being more fuzzy/confused or with any other symptoms of his generalized illness he is having? And so, my understanding from the comment Dr. Sermas made is that your father does not really exit from where he's at cognitively at present to any HIGHER state of mental functioning...is that correct? Has he been treated with antiepileptic medications empirically on the basis of the presence of the epileptiform discharges in the frontal lobes? The most common causes of those frontal discharges would either be an INFECTOUS process, a STRUCTURAL LESION, or a METABOLIC derangement of the brain.
BTW, I am familiar with papers of Dr. Schiffman having to do mainly with neurometabolic disorders such as Gaucher's disease and other lysosomal storage diseases. He is primarily a pediatric neurologist with the sub-specialty ...but by all means unless there is an ADULT neurologist who is also into the neurometabolic tract as Dr. Schiffman I don't see any problem with Dr. Schiffman being involved. He's likely one of the most knowledgeable people in the department on neurometabolic disorders in both pediatric as well adult patients.
The thing that I don't quite like is the MRI finding of cerebral swelling which I believe was somewhat FOCAL. That to me is nearly always the SMOKING GUN necessary to get suspicious for an infectious process. I didn't see any evidence in any scans to this point of petechial hemorrhages or any other type of intracranial bleeding in a focal area which is the sine qua non of a herpetic infection until proven otherwise. Dr. Schiffman is not a headache sub-specialist as far as know since I go to all the XXXXXXX Headache Society meetings and have never seen him there....therefore, I'd like to know what criteria he applied to make the clinical diagnosis of this disorder in your father.
I also wanted to just briefly comment on your reading of the Coimbra protocol for MEGADOSE vitamin D therapy. I have some significant reservations on the use and implementation of this protocol which if you would like to move toward my going into more depth by privately consulting on your father I can give you the details on....I am a big proponent and big fan of replenishing and replacing low Vitamin D levels which seems to be present in virtually EVERYBODY (young and old, normal or infirmed...), however, I have seen what happens to patients when they get overdosed on Vitamin D which can happen at doses significant lower than the Coimbra protocol calls for....however, as I said, this would be something to explore in more detail so that I can share my reasons for skepticism on this protocol. I do not know if it would help your father but I don't see a downside to making sure he well loaded with adequate target. I do this FOR VIRTUALLY ALL my neurology patients including those with headache MS, as well as several patients I currently have who suffer from autoimmune diseases such as PSORIASIS, PSORIATIC ARTHRITIS, LUPUS, and AUTOIMMUNE AUTONOMIC DYSFUNCTION who suffer cognitive symptoms on a waxing and waning basis. But I do not see the need to use the MEGADOSES that Dr. Coimbra promotes based on the fact that he does not have his method in any type of peer reviewed publication that can then, be available for comment and criticism by plausible and capable colleagues who could potentially improve the concept. Again, I totally support the use of Vitamin D in supplemental form for someone such as your father but I do not feel that the MEGADOSE amounts would offer any better clinical effects than the higher doses necessary to hit the serum target levels that I typically feel represent more rational ranges than the traditional and standard lab values which derive more from the RDA (Recommended Daily Amount) tables first published in 1941.
If you would like to discuss a potential private consultation for your father please call us at Parma Neurology at your earliest convenience and I will have someone from the office go over initial details on how we perform such consults (440.842.3816).
I look forward to the possibility of helping your father and trying to attack this problem in the most efficient and innovative way possible.
In the mean time if I have provided any bit more of useful information to help open up a few more doors to managing your dad...could you consider CLOSING THE PRESENT QUERY along with some words of positive note and a 5-star rating if you're of the opinion the discussions have been worthy. No matter what your decision may be on going forward or not with a private consultation I am highly interested in this mystery and would love to get updated information on his condition at www.bit.ly/drdariushsaghafi.
Cheers!
This query has to this point required 345 minutes of professional time to research, assimilate, and file a response
You are clearly smart enough not to sit in sandboxes with RED ANTS
Detailed Answer:
Screaming out when seeing FIRE ANTS is nothing to be ashamed of my dear.....you are only helping your fellow man....at least you have more sense than to sit in the middle of them as I did and just watch them kind of crawling over you without doing anything! LOL... Isn't that hilarious what your sister and I share in terms of having had surgery at S&W? I should tell you another interesting story which is a teammate of mine on the rugby team I play for who is a little less than 30 years my junior was born at the same hospital I was in New Jersey! And the only reason we found out was because somehow our conversation came around to where we had each been born and it turned out to be NJ which was cool but not extraordinary until I challenged him by saying that I bet I was born in the hospital with the most hilarious name in the World....MIDDLESEX MEMORIAL...and I thought I'd stump him with that...but then, he retorted....."Which got its name changed to the XXXXXXX Wood XXXXXXX Foundation....and THAT was the hospital I was born in!!" LOL!
As a headache sub-specialist I'm curious about the diagnosis of HM's....I don't think I recall your saying that your dad suffered or suffers from migraines. Do these headaches coincide in time with his being more fuzzy/confused or with any other symptoms of his generalized illness he is having? And so, my understanding from the comment Dr. Sermas made is that your father does not really exit from where he's at cognitively at present to any HIGHER state of mental functioning...is that correct? Has he been treated with antiepileptic medications empirically on the basis of the presence of the epileptiform discharges in the frontal lobes? The most common causes of those frontal discharges would either be an INFECTOUS process, a STRUCTURAL LESION, or a METABOLIC derangement of the brain.
BTW, I am familiar with papers of Dr. Schiffman having to do mainly with neurometabolic disorders such as Gaucher's disease and other lysosomal storage diseases. He is primarily a pediatric neurologist with the sub-specialty ...but by all means unless there is an ADULT neurologist who is also into the neurometabolic tract as Dr. Schiffman I don't see any problem with Dr. Schiffman being involved. He's likely one of the most knowledgeable people in the department on neurometabolic disorders in both pediatric as well adult patients.
The thing that I don't quite like is the MRI finding of cerebral swelling which I believe was somewhat FOCAL. That to me is nearly always the SMOKING GUN necessary to get suspicious for an infectious process. I didn't see any evidence in any scans to this point of petechial hemorrhages or any other type of intracranial bleeding in a focal area which is the sine qua non of a herpetic infection until proven otherwise. Dr. Schiffman is not a headache sub-specialist as far as know since I go to all the XXXXXXX Headache Society meetings and have never seen him there....therefore, I'd like to know what criteria he applied to make the clinical diagnosis of this disorder in your father.
I also wanted to just briefly comment on your reading of the Coimbra protocol for MEGADOSE vitamin D therapy. I have some significant reservations on the use and implementation of this protocol which if you would like to move toward my going into more depth by privately consulting on your father I can give you the details on....I am a big proponent and big fan of replenishing and replacing low Vitamin D levels which seems to be present in virtually EVERYBODY (young and old, normal or infirmed...), however, I have seen what happens to patients when they get overdosed on Vitamin D which can happen at doses significant lower than the Coimbra protocol calls for....however, as I said, this would be something to explore in more detail so that I can share my reasons for skepticism on this protocol. I do not know if it would help your father but I don't see a downside to making sure he well loaded with adequate target. I do this FOR VIRTUALLY ALL my neurology patients including those with headache MS, as well as several patients I currently have who suffer from autoimmune diseases such as PSORIASIS, PSORIATIC ARTHRITIS, LUPUS, and AUTOIMMUNE AUTONOMIC DYSFUNCTION who suffer cognitive symptoms on a waxing and waning basis. But I do not see the need to use the MEGADOSES that Dr. Coimbra promotes based on the fact that he does not have his method in any type of peer reviewed publication that can then, be available for comment and criticism by plausible and capable colleagues who could potentially improve the concept. Again, I totally support the use of Vitamin D in supplemental form for someone such as your father but I do not feel that the MEGADOSE amounts would offer any better clinical effects than the higher doses necessary to hit the serum target levels that I typically feel represent more rational ranges than the traditional and standard lab values which derive more from the RDA (Recommended Daily Amount) tables first published in 1941.
If you would like to discuss a potential private consultation for your father please call us at Parma Neurology at your earliest convenience and I will have someone from the office go over initial details on how we perform such consults (440.842.3816).
I look forward to the possibility of helping your father and trying to attack this problem in the most efficient and innovative way possible.
In the mean time if I have provided any bit more of useful information to help open up a few more doors to managing your dad...could you consider CLOSING THE PRESENT QUERY along with some words of positive note and a 5-star rating if you're of the opinion the discussions have been worthy. No matter what your decision may be on going forward or not with a private consultation I am highly interested in this mystery and would love to get updated information on his condition at www.bit.ly/drdariushsaghafi.
Cheers!
This query has to this point required 345 minutes of professional time to research, assimilate, and file a response
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thats to funny! who would have ever thought that youd both have such an odd named hospital in common.
He has suffeted from headache/migraine most of his life. (he was once a very heavy drinker so was one of the two other brothers who suffered symptoms) Orginaly in%E2%80%9908 (the first hospitalation from an %E2%80%9Cepisode%E2%80%9D) the belief was is was a migraine. It took lost of convincing to get a doctor to look else where. He was sent home 2x from ER before he was admited. Then when we started with Dr.Schiffman he was positive that HM was it. My sister who suffers from childhood eplispe s(she%E2%80%99s 50) had a HM 2x. I have migrains with visual disturbances. Dad does have a headache with each major %E2%80%9Cepiside%E2%80%9D he says it%E2%80%99s the worst of his life. But that usually coincides with %E2%80%9Csomething%E2%80%9D showing up on the MRI finaly. He does come out of these confused states. when he surfaces he never gets back to baseline. There is alway some decline that remains. Each eposide takes a little more away. Stress, both physical and mental, some meds all can induce an %E2%80%9Ceposide%E2%80%9D. He has Thats to funny! who would have ever thought that youd both have such an odd named hospital in common.
He has suffeted from headache/migraine most of his life. (he was once a very heavy drinker so was one of the two other brothers who suffered symptoms) Orginaly in%E2%80%9908 (the first hospitalation from an %E2%80%9Cepisode%E2%80%9D) the belief was is was a migraine. It took lost of convincing to get a doctor to look else where. He was sent home 2x from ER before he was admited. Then when we started with Dr.Schiffman he was positive that HM was it. My sister who suffers from childhood eplispe s(she%E2%80%99s 50) had a HM 2x. I have migrains with visual disturbances. Dad does have a headache with each major %E2%80%9Cepiside%E2%80%9D he says it%E2%80%99s the worst of his life. But that usually coincides with %E2%80%9Csomething%E2%80%9D showing up on the MRI finaly. He does come out of these confused states. when he surfaces he never gets back to baseline. There is alway some decline that remains. Each eposide takes a little more away. Stress, both physical and mental, lights, some meds all can induce an %E2%80%9Ceposide%E2%80%9D. He has been seizure meds since %E2%80%9808. We have only see one true siezure that was in the hospital. His episodes do tend to has the same as triggers as reflex seizures (now) had not noticed this in the past.
He has suffeted from headache/migraine most of his life. (he was once a very heavy drinker so was one of the two other brothers who suffered symptoms) Orginaly in%E2%80%9908 (the first hospitalation from an %E2%80%9Cepisode%E2%80%9D) the belief was is was a migraine. It took lost of convincing to get a doctor to look else where. He was sent home 2x from ER before he was admited. Then when we started with Dr.Schiffman he was positive that HM was it. My sister who suffers from childhood eplispe s(she%E2%80%99s 50) had a HM 2x. I have migrains with visual disturbances. Dad does have a headache with each major %E2%80%9Cepiside%E2%80%9D he says it%E2%80%99s the worst of his life. But that usually coincides with %E2%80%9Csomething%E2%80%9D showing up on the MRI finaly. He does come out of these confused states. when he surfaces he never gets back to baseline. There is alway some decline that remains. Each eposide takes a little more away. Stress, both physical and mental, some meds all can induce an %E2%80%9Ceposide%E2%80%9D. He has Thats to funny! who would have ever thought that youd both have such an odd named hospital in common.
He has suffeted from headache/migraine most of his life. (he was once a very heavy drinker so was one of the two other brothers who suffered symptoms) Orginaly in%E2%80%9908 (the first hospitalation from an %E2%80%9Cepisode%E2%80%9D) the belief was is was a migraine. It took lost of convincing to get a doctor to look else where. He was sent home 2x from ER before he was admited. Then when we started with Dr.Schiffman he was positive that HM was it. My sister who suffers from childhood eplispe s(she%E2%80%99s 50) had a HM 2x. I have migrains with visual disturbances. Dad does have a headache with each major %E2%80%9Cepiside%E2%80%9D he says it%E2%80%99s the worst of his life. But that usually coincides with %E2%80%9Csomething%E2%80%9D showing up on the MRI finaly. He does come out of these confused states. when he surfaces he never gets back to baseline. There is alway some decline that remains. Each eposide takes a little more away. Stress, both physical and mental, lights, some meds all can induce an %E2%80%9Ceposide%E2%80%9D. He has been seizure meds since %E2%80%9808. We have only see one true siezure that was in the hospital. His episodes do tend to has the same as triggers as reflex seizures (now) had not noticed this in the past.
Thats to funny! who would have ever thought that youd both have such an odd named hospital in common.
He has suffeted from headache/migraine most of his life. (he was once a very heavy drinker so was one of the two other brothers who suffered symptoms) Orginaly in%E2%80%9908 (the first hospitalation from an %E2%80%9Cepisode%E2%80%9D) the belief was is was a migraine. It took lost of convincing to get a doctor to look else where. He was sent home 2x from ER before he was admited. Then when we started with Dr.Schiffman he was positive that HM was it. My sister who suffers from childhood eplispe s(she%E2%80%99s 50) had a HM 2x. I have migrains with visual disturbances. Dad does have a headache with each major %E2%80%9Cepiside%E2%80%9D he says it%E2%80%99s the worst of his life. But that usually coincides with %E2%80%9Csomething%E2%80%9D showing up on the MRI finaly. He does come out of these confused states. when he surfaces he never gets back to baseline. There is alway some decline that remains. Each eposide takes a little more away. Stress, both physical and mental, some meds all can induce an %E2%80%9Ceposide%E2%80%9D. He has Thats to funny! who would have ever thought that youd both have such an odd named hospital in common.
He has suffeted from headache/migraine most of his life. (he was once a very heavy drinker so was one of the two other brothers who suffered symptoms) Orginaly in%E2%80%9908 (the first hospitalation from an %E2%80%9Cepisode%E2%80%9D) the belief was is was a migraine. It took lost of convincing to get a doctor to look else where. He was sent home 2x from ER before he was admited. Then when we started with Dr.Schiffman he was positive that HM was it. My sister who suffers from childhood eplispe s(she%E2%80%99s 50) had a HM 2x. I have migrains with visual disturbances. Dad does have a headache with each major %E2%80%9Cepiside%E2%80%9D he says it%E2%80%99s the worst of his life. But that usually coincides with %E2%80%9Csomething%E2%80%9D showing up on the MRI finaly. He does come out of these confused states. when he surfaces he never gets back to baseline. There is alway some decline that remains. Each eposide takes a little more away. Stress, both physical and mental, lights, some meds all can induce an %E2%80%9Ceposide%E2%80%9D. He has been seizure meds since %E2%80%9808. We have only see one true siezure that was in the hospital. His episodes do tend to has the same as triggers as reflex seizures (now) had not noticed this in the past.
He has suffeted from headache/migraine most of his life. (he was once a very heavy drinker so was one of the two other brothers who suffered symptoms) Orginaly in%E2%80%9908 (the first hospitalation from an %E2%80%9Cepisode%E2%80%9D) the belief was is was a migraine. It took lost of convincing to get a doctor to look else where. He was sent home 2x from ER before he was admited. Then when we started with Dr.Schiffman he was positive that HM was it. My sister who suffers from childhood eplispe s(she%E2%80%99s 50) had a HM 2x. I have migrains with visual disturbances. Dad does have a headache with each major %E2%80%9Cepiside%E2%80%9D he says it%E2%80%99s the worst of his life. But that usually coincides with %E2%80%9Csomething%E2%80%9D showing up on the MRI finaly. He does come out of these confused states. when he surfaces he never gets back to baseline. There is alway some decline that remains. Each eposide takes a little more away. Stress, both physical and mental, some meds all can induce an %E2%80%9Ceposide%E2%80%9D. He has Thats to funny! who would have ever thought that youd both have such an odd named hospital in common.
He has suffeted from headache/migraine most of his life. (he was once a very heavy drinker so was one of the two other brothers who suffered symptoms) Orginaly in%E2%80%9908 (the first hospitalation from an %E2%80%9Cepisode%E2%80%9D) the belief was is was a migraine. It took lost of convincing to get a doctor to look else where. He was sent home 2x from ER before he was admited. Then when we started with Dr.Schiffman he was positive that HM was it. My sister who suffers from childhood eplispe s(she%E2%80%99s 50) had a HM 2x. I have migrains with visual disturbances. Dad does have a headache with each major %E2%80%9Cepiside%E2%80%9D he says it%E2%80%99s the worst of his life. But that usually coincides with %E2%80%9Csomething%E2%80%9D showing up on the MRI finaly. He does come out of these confused states. when he surfaces he never gets back to baseline. There is alway some decline that remains. Each eposide takes a little more away. Stress, both physical and mental, lights, some meds all can induce an %E2%80%9Ceposide%E2%80%9D. He has been seizure meds since %E2%80%9808. We have only see one true siezure that was in the hospital. His episodes do tend to has the same as triggers as reflex seizures (now) had not noticed this in the past.
Brief Answer:
Thanks for information- Now how about some translation for me? LOL
Detailed Answer:
Thank you for additional information. BUT---Can you please translate the following statements which are appearing with SYMBOLS on my end? I'm not sure whether it's the type of FONT you are using on your computer or whatever device you are using to transmit these messages, however, it is difficult to get precise information quickly since I have to try and decipher it by the context. I am simply going to copy and paste the statements and place the SYMBOLIC portion of the sentence in PARENTHESES. I hope what I am seeing as SYMBOLS comes out the same on your end. I suppose the possibility exists that the symbols I am copying and pasting to you are being RE-TRANSCRIBED back into the normal letters your machine is used to using when it sees certain symbols....you know what I mean? Let's see if you can translate these things for me.
------------------------------------------------------------------------------------------
1. Orginaly in ( %E2%80%9908 ) (the first hospitalation from an ( %E2%80%9C ) episode ( %E2%80%9D) ) the belief was is was a migraine.
2. My sister who suffers from childhood eplispe s(she ( %E2%80%99s 50) ) had a HM 2x.
3. Dad does have a headache with each major ( %E2%80%9Cepiside%E2%80%9D ) he says it ( %E2%80%99s ) the worst of his life.
4. But that usually coincides with ( %E2%80%9Csomething%E2%80%9D ) showing up on the MRI finaly.
5. Stress, both physical and mental, lights, some meds all can induce an ( %E2%80%9Ceposide%E2%80%9D ).
6. He has been seizure meds since ( %E2%80%9808 ) .
I know you can't control these glitches but there are many more of these in the previous messages and although I think I understand the majority of them...there are some that are totally incomprehensible to me. I'm afraid this could interfere with being able to fully comprehend what's been going on and compromises answers I know you are trying to give me in response to my questions. Is there any way you could work with tech support to find out what your device is doing....OR...what their SERVER might be doing to explain why your device's typed information gets converted into these uncalled for transcriptions when recording what you wrote and passing it to me?
QUESTION: Have you heard anyone talk about something called COMPLEX PARTIALIS CONTINUA which is a form of seizure disorder. I've had cases during training which your dad's case reminds me a lot of when I read your description of how he waxes and wanes in these states of cognitive fog.
Cheers!
Thanks for information- Now how about some translation for me? LOL
Detailed Answer:
Thank you for additional information. BUT---Can you please translate the following statements which are appearing with SYMBOLS on my end? I'm not sure whether it's the type of FONT you are using on your computer or whatever device you are using to transmit these messages, however, it is difficult to get precise information quickly since I have to try and decipher it by the context. I am simply going to copy and paste the statements and place the SYMBOLIC portion of the sentence in PARENTHESES. I hope what I am seeing as SYMBOLS comes out the same on your end. I suppose the possibility exists that the symbols I am copying and pasting to you are being RE-TRANSCRIBED back into the normal letters your machine is used to using when it sees certain symbols....you know what I mean? Let's see if you can translate these things for me.
------------------------------------------------------------------------------------------
1. Orginaly in ( %E2%80%9908 ) (the first hospitalation from an ( %E2%80%9C ) episode ( %E2%80%9D) ) the belief was is was a migraine.
2. My sister who suffers from childhood eplispe s(she ( %E2%80%99s 50) ) had a HM 2x.
3. Dad does have a headache with each major ( %E2%80%9Cepiside%E2%80%9D ) he says it ( %E2%80%99s ) the worst of his life.
4. But that usually coincides with ( %E2%80%9Csomething%E2%80%9D ) showing up on the MRI finaly.
5. Stress, both physical and mental, lights, some meds all can induce an ( %E2%80%9Ceposide%E2%80%9D ).
6. He has been seizure meds since ( %E2%80%9808 ) .
I know you can't control these glitches but there are many more of these in the previous messages and although I think I understand the majority of them...there are some that are totally incomprehensible to me. I'm afraid this could interfere with being able to fully comprehend what's been going on and compromises answers I know you are trying to give me in response to my questions. Is there any way you could work with tech support to find out what your device is doing....OR...what their SERVER might be doing to explain why your device's typed information gets converted into these uncalled for transcriptions when recording what you wrote and passing it to me?
QUESTION: Have you heard anyone talk about something called COMPLEX PARTIALIS CONTINUA which is a form of seizure disorder. I've had cases during training which your dad's case reminds me a lot of when I read your description of how he waxes and wanes in these states of cognitive fog.
Cheers!
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
Thanks for information- Now how about some translation for me? LOL
Detailed Answer:
Thank you for additional information. BUT---Can you please translate the following statements which are appearing with SYMBOLS on my end? I'm not sure whether it's the type of FONT you are using on your computer or whatever device you are using to transmit these messages, however, it is difficult to get precise information quickly since I have to try and decipher it by the context. I am simply going to copy and paste the statements and place the SYMBOLIC portion of the sentence in PARENTHESES. I hope what I am seeing as SYMBOLS comes out the same on your end. I suppose the possibility exists that the symbols I am copying and pasting to you are being RE-TRANSCRIBED back into the normal letters your machine is used to using when it sees certain symbols....you know what I mean? Let's see if you can translate these things for me.
------------------------------------------------------------------------------------------
1. Orginaly in ( %E2%80%9908 ) (the first hospitalation from an ( %E2%80%9C ) episode ( %E2%80%9D) ) the belief was is was a migraine.
2. My sister who suffers from childhood eplispe s(she ( %E2%80%99s 50) ) had a HM 2x.
3. Dad does have a headache with each major ( %E2%80%9Cepiside%E2%80%9D ) he says it ( %E2%80%99s ) the worst of his life.
4. But that usually coincides with ( %E2%80%9Csomething%E2%80%9D ) showing up on the MRI finaly.
5. Stress, both physical and mental, lights, some meds all can induce an ( %E2%80%9Ceposide%E2%80%9D ).
6. He has been seizure meds since ( %E2%80%9808 ) .
I know you can't control these glitches but there are many more of these in the previous messages and although I think I understand the majority of them...there are some that are totally incomprehensible to me. I'm afraid this could interfere with being able to fully comprehend what's been going on and compromises answers I know you are trying to give me in response to my questions. Is there any way you could work with tech support to find out what your device is doing....OR...what their SERVER might be doing to explain why your device's typed information gets converted into these uncalled for transcriptions when recording what you wrote and passing it to me?
QUESTION: Have you heard anyone talk about something called COMPLEX PARTIALIS CONTINUA which is a form of seizure disorder. I've had cases during training which your dad's case reminds me a lot of when I read your description of how he waxes and wanes in these states of cognitive fog.
Cheers!
Thanks for information- Now how about some translation for me? LOL
Detailed Answer:
Thank you for additional information. BUT---Can you please translate the following statements which are appearing with SYMBOLS on my end? I'm not sure whether it's the type of FONT you are using on your computer or whatever device you are using to transmit these messages, however, it is difficult to get precise information quickly since I have to try and decipher it by the context. I am simply going to copy and paste the statements and place the SYMBOLIC portion of the sentence in PARENTHESES. I hope what I am seeing as SYMBOLS comes out the same on your end. I suppose the possibility exists that the symbols I am copying and pasting to you are being RE-TRANSCRIBED back into the normal letters your machine is used to using when it sees certain symbols....you know what I mean? Let's see if you can translate these things for me.
------------------------------------------------------------------------------------------
1. Orginaly in ( %E2%80%9908 ) (the first hospitalation from an ( %E2%80%9C ) episode ( %E2%80%9D) ) the belief was is was a migraine.
2. My sister who suffers from childhood eplispe s(she ( %E2%80%99s 50) ) had a HM 2x.
3. Dad does have a headache with each major ( %E2%80%9Cepiside%E2%80%9D ) he says it ( %E2%80%99s ) the worst of his life.
4. But that usually coincides with ( %E2%80%9Csomething%E2%80%9D ) showing up on the MRI finaly.
5. Stress, both physical and mental, lights, some meds all can induce an ( %E2%80%9Ceposide%E2%80%9D ).
6. He has been seizure meds since ( %E2%80%9808 ) .
I know you can't control these glitches but there are many more of these in the previous messages and although I think I understand the majority of them...there are some that are totally incomprehensible to me. I'm afraid this could interfere with being able to fully comprehend what's been going on and compromises answers I know you are trying to give me in response to my questions. Is there any way you could work with tech support to find out what your device is doing....OR...what their SERVER might be doing to explain why your device's typed information gets converted into these uncalled for transcriptions when recording what you wrote and passing it to me?
QUESTION: Have you heard anyone talk about something called COMPLEX PARTIALIS CONTINUA which is a form of seizure disorder. I've had cases during training which your dad's case reminds me a lot of when I read your description of how he waxes and wanes in these states of cognitive fog.
Cheers!
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
I should add that on all three spinal tap they checked for HSV and all three came back. HSE was the thought on both of the other brothers who were symptomatic. Both of their spinal fluid was negative for herpes also.
I should add that on all three spinal tap they checked for HSV and all three came back. HSE was the thought on both of the other brothers who were symptomatic. Both of their spinal fluid was negative for herpes also.
Brief Answer:
Did you catch my response of 36 minutes ago requesting transcriptions?
Detailed Answer:
And did everyone including your dad get treated with IV Acyclovir to see if anybody got better despite the PCR's coming back negative?
Did they check for other viral entities such as EBV, West Nile, Adeno (which is what my patient ended up having who also have similar symptoms and brain pathology)? Any discussion of doing brain biopsies in frontal areas if there were any zones affected with swelling or inflammation....or HYPOMETABOLIC asymmetric regions on the PET scan?
Can you also provide the conclusions from the PET scan in full format? The scanned copy you sent me got chopped off at the bottom. Also, did you get my request for transcriptions of phrases that are all jumbled up into incomprehensible SYMBOLS in your message? It has to have something to do with the font your device is using which cannot be formatted by the Healthcaremagic software on this end so I just get things like &%%000@@, etc. Makes it very difficult to read things and get full meaning and context.
Cheers!
This query has to this point required 385 minutes of professional time to research, assimilate, and file a response.
Did you catch my response of 36 minutes ago requesting transcriptions?
Detailed Answer:
And did everyone including your dad get treated with IV Acyclovir to see if anybody got better despite the PCR's coming back negative?
Did they check for other viral entities such as EBV, West Nile, Adeno (which is what my patient ended up having who also have similar symptoms and brain pathology)? Any discussion of doing brain biopsies in frontal areas if there were any zones affected with swelling or inflammation....or HYPOMETABOLIC asymmetric regions on the PET scan?
Can you also provide the conclusions from the PET scan in full format? The scanned copy you sent me got chopped off at the bottom. Also, did you get my request for transcriptions of phrases that are all jumbled up into incomprehensible SYMBOLS in your message? It has to have something to do with the font your device is using which cannot be formatted by the Healthcaremagic software on this end so I just get things like &%%000@@, etc. Makes it very difficult to read things and get full meaning and context.
Cheers!
This query has to this point required 385 minutes of professional time to research, assimilate, and file a response.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
Did you catch my response of 36 minutes ago requesting transcriptions?
Detailed Answer:
And did everyone including your dad get treated with IV Acyclovir to see if anybody got better despite the PCR's coming back negative?
Did they check for other viral entities such as EBV, West Nile, Adeno (which is what my patient ended up having who also have similar symptoms and brain pathology)? Any discussion of doing brain biopsies in frontal areas if there were any zones affected with swelling or inflammation....or HYPOMETABOLIC asymmetric regions on the PET scan?
Can you also provide the conclusions from the PET scan in full format? The scanned copy you sent me got chopped off at the bottom. Also, did you get my request for transcriptions of phrases that are all jumbled up into incomprehensible SYMBOLS in your message? It has to have something to do with the font your device is using which cannot be formatted by the Healthcaremagic software on this end so I just get things like &%%000@@, etc. Makes it very difficult to read things and get full meaning and context.
Cheers!
This query has to this point required 385 minutes of professional time to research, assimilate, and file a response.
Did you catch my response of 36 minutes ago requesting transcriptions?
Detailed Answer:
And did everyone including your dad get treated with IV Acyclovir to see if anybody got better despite the PCR's coming back negative?
Did they check for other viral entities such as EBV, West Nile, Adeno (which is what my patient ended up having who also have similar symptoms and brain pathology)? Any discussion of doing brain biopsies in frontal areas if there were any zones affected with swelling or inflammation....or HYPOMETABOLIC asymmetric regions on the PET scan?
Can you also provide the conclusions from the PET scan in full format? The scanned copy you sent me got chopped off at the bottom. Also, did you get my request for transcriptions of phrases that are all jumbled up into incomprehensible SYMBOLS in your message? It has to have something to do with the font your device is using which cannot be formatted by the Healthcaremagic software on this end so I just get things like &%%000@@, etc. Makes it very difficult to read things and get full meaning and context.
Cheers!
This query has to this point required 385 minutes of professional time to research, assimilate, and file a response.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
I thought the symbols was just part of the challenge for you docs. Maybe if a case was boring they%E2%80%99d add a little challenge for you. lol Lets try it this way. I think when I use my labtop we get the symbols.
Only 1 brother was treated with Acyclovir. The notes that I have only refer to pill form. He contuined to decline. His first %E2%80%9Ceposide%E2%80%9D was in the %E2%80%9880%E2%80%99s so information is limited. The other brother was treated as if it was %E2%80%9Csometype of infection caused by a mosquito%E2%80%9D although no clinical evidence of an infection.
Dad was tested for West nile and EB both negetive. He was not cheched for Adeno. He was transferred to the XXXXXXX Methodist Hospital for a brain biopsy. after a couple days of being there that%E2%80%99s when Dad presented with what was thought to be the first actual physical symptoms of a stroke. He was taken for an MRI at that time it was negitive for stroke. The next day Melas was his diagnoses. at that point we were told there was no need for a brain biopsy.
main point in the symbols message is that all 2 of the 3 brothers were very heavy drinkers. The 1 non-drinker had the earliest onset of symptoms. He come out of these %E2%80%9Cepisides%E2%80%9D but looses a litte each time. meaning he never gets back to base. They all were very intelligent men, with a little formal education they all managed to create multimillion dollar businesses. some of the medical records only indicate that they were %E2%80%9Ctruck drivers%E2%80%9D but in reality they were captains of their industry. I feel like that%E2%80%99s important to see the amount of decline the dad has had.
He has been on seizure meds since 2008. He does present with a headche during major %E2%80%9Ceposides%E2%80%9D
Currently he is in a period of walking confusion more than not. This is a new change. At the beginning %E2%80%9Ceposides%E2%80%9D were far apart, months. Now it can be daily.
I will send the complet PET scan.
let%E2%80%99s see if this one ends up with symbols. Unfortunately I can%E2%80%99t see on my end if the symbols are there until after I hit the send button.
Only 1 brother was treated with Acyclovir. The notes that I have only refer to pill form. He contuined to decline. His first %E2%80%9Ceposide%E2%80%9D was in the %E2%80%9880%E2%80%99s so information is limited. The other brother was treated as if it was %E2%80%9Csometype of infection caused by a mosquito%E2%80%9D although no clinical evidence of an infection.
Dad was tested for West nile and EB both negetive. He was not cheched for Adeno. He was transferred to the XXXXXXX Methodist Hospital for a brain biopsy. after a couple days of being there that%E2%80%99s when Dad presented with what was thought to be the first actual physical symptoms of a stroke. He was taken for an MRI at that time it was negitive for stroke. The next day Melas was his diagnoses. at that point we were told there was no need for a brain biopsy.
main point in the symbols message is that all 2 of the 3 brothers were very heavy drinkers. The 1 non-drinker had the earliest onset of symptoms. He come out of these %E2%80%9Cepisides%E2%80%9D but looses a litte each time. meaning he never gets back to base. They all were very intelligent men, with a little formal education they all managed to create multimillion dollar businesses. some of the medical records only indicate that they were %E2%80%9Ctruck drivers%E2%80%9D but in reality they were captains of their industry. I feel like that%E2%80%99s important to see the amount of decline the dad has had.
He has been on seizure meds since 2008. He does present with a headche during major %E2%80%9Ceposides%E2%80%9D
Currently he is in a period of walking confusion more than not. This is a new change. At the beginning %E2%80%9Ceposides%E2%80%9D were far apart, months. Now it can be daily.
I will send the complet PET scan.
let%E2%80%99s see if this one ends up with symbols. Unfortunately I can%E2%80%99t see on my end if the symbols are there until after I hit the send button.
I thought the symbols was just part of the challenge for you docs. Maybe if a case was boring they%E2%80%99d add a little challenge for you. lol Lets try it this way. I think when I use my labtop we get the symbols.
Only 1 brother was treated with Acyclovir. The notes that I have only refer to pill form. He contuined to decline. His first %E2%80%9Ceposide%E2%80%9D was in the %E2%80%9880%E2%80%99s so information is limited. The other brother was treated as if it was %E2%80%9Csometype of infection caused by a mosquito%E2%80%9D although no clinical evidence of an infection.
Dad was tested for West nile and EB both negetive. He was not cheched for Adeno. He was transferred to the XXXXXXX Methodist Hospital for a brain biopsy. after a couple days of being there that%E2%80%99s when Dad presented with what was thought to be the first actual physical symptoms of a stroke. He was taken for an MRI at that time it was negitive for stroke. The next day Melas was his diagnoses. at that point we were told there was no need for a brain biopsy.
main point in the symbols message is that all 2 of the 3 brothers were very heavy drinkers. The 1 non-drinker had the earliest onset of symptoms. He come out of these %E2%80%9Cepisides%E2%80%9D but looses a litte each time. meaning he never gets back to base. They all were very intelligent men, with a little formal education they all managed to create multimillion dollar businesses. some of the medical records only indicate that they were %E2%80%9Ctruck drivers%E2%80%9D but in reality they were captains of their industry. I feel like that%E2%80%99s important to see the amount of decline the dad has had.
He has been on seizure meds since 2008. He does present with a headche during major %E2%80%9Ceposides%E2%80%9D
Currently he is in a period of walking confusion more than not. This is a new change. At the beginning %E2%80%9Ceposides%E2%80%9D were far apart, months. Now it can be daily.
I will send the complet PET scan.
let%E2%80%99s see if this one ends up with symbols. Unfortunately I can%E2%80%99t see on my end if the symbols are there until after I hit the send button.
Only 1 brother was treated with Acyclovir. The notes that I have only refer to pill form. He contuined to decline. His first %E2%80%9Ceposide%E2%80%9D was in the %E2%80%9880%E2%80%99s so information is limited. The other brother was treated as if it was %E2%80%9Csometype of infection caused by a mosquito%E2%80%9D although no clinical evidence of an infection.
Dad was tested for West nile and EB both negetive. He was not cheched for Adeno. He was transferred to the XXXXXXX Methodist Hospital for a brain biopsy. after a couple days of being there that%E2%80%99s when Dad presented with what was thought to be the first actual physical symptoms of a stroke. He was taken for an MRI at that time it was negitive for stroke. The next day Melas was his diagnoses. at that point we were told there was no need for a brain biopsy.
main point in the symbols message is that all 2 of the 3 brothers were very heavy drinkers. The 1 non-drinker had the earliest onset of symptoms. He come out of these %E2%80%9Cepisides%E2%80%9D but looses a litte each time. meaning he never gets back to base. They all were very intelligent men, with a little formal education they all managed to create multimillion dollar businesses. some of the medical records only indicate that they were %E2%80%9Ctruck drivers%E2%80%9D but in reality they were captains of their industry. I feel like that%E2%80%99s important to see the amount of decline the dad has had.
He has been on seizure meds since 2008. He does present with a headche during major %E2%80%9Ceposides%E2%80%9D
Currently he is in a period of walking confusion more than not. This is a new change. At the beginning %E2%80%9Ceposides%E2%80%9D were far apart, months. Now it can be daily.
I will send the complet PET scan.
let%E2%80%99s see if this one ends up with symbols. Unfortunately I can%E2%80%99t see on my end if the symbols are there until after I hit the send button.
well guess i was wrong on whats causing the symbols. I will send an email to see whats going on.
https:/pic.nc/sh/c2f176d27246ae
here in the picnic health link if youd like to see his whole medical record.
you will need his DOB
may 11,1951
i have attatched the scan report
https:/pic.nc/sh/c2f176d27246ae
here in the picnic health link if youd like to see his whole medical record.
you will need his DOB
may 11,1951
i have attatched the scan report
well guess i was wrong on whats causing the symbols. I will send an email to see whats going on.
https:/pic.nc/sh/c2f176d27246ae
here in the picnic health link if youd like to see his whole medical record.
you will need his DOB
may 11,1951
i have attatched the scan report
https:/pic.nc/sh/c2f176d27246ae
here in the picnic health link if youd like to see his whole medical record.
you will need his DOB
may 11,1951
i have attatched the scan report
Brief Answer:
Lacking information from his latest PET scan and other records
Detailed Answer:
Good evening (Yes, the name of the hospital I was born at does make one giggle doesn't it?... perhaps, NOT in England where the name most probably derives?? :0 ).
I've gone through the uploaded files that you've provided but I do not see anything that's been aggregated since my last review 24 hrs. ago.
The latest PET scan that I can view is cut off at the bottom and I cannot see the radiologist's complete IMPRESSION.
I'm also wondering if there is a 2nd page to an MRI report which I believe was accessioned on or about April 2018. I cannot see any signature by a radiologist nor any IMPRESSION which typically follows the section entitled FINDINGS. Also, the radiologist made no comparative analysis with the MRI report of 2009 which was one of the things they were requested to do which would be interesting to read.
Also, I understand that you're having some technical issues with words/phrases that are apparently being transcribed into SYMBOLS on this platform and your last message contains a number of these strange "hieroglyphics"....HA! It is for the most part understandable by not fully....but enough.
I understand that he was checked for the usual suspects of viruses which came back negative. He was NOT checked for ADENOVIRUS...which funnily enough is the one virus that my patient who was encephalitic and actually virtually comatose the whole time he was in the hospital (never really recovered consciousness before he was transferred to Long term care) ended up testing POSITIVE for while he was negative (just like your father) to everything else. I would've elected to trial ACYCLOVIR as an IV for at least 7-10 days...but based on everything I'm gathering....I would say the likelihood of him having responded would've been the same as he did to the tablet form. I may have also gone for viral cultures for measles although this presents more as a MENINGITIC PROCESS rather than ENCEPHALITIC.
I'm impressed with the initial scans in 2008 and 2009 of the focal gyral swellings in the temporal and occipital lobes. Makes sense since those lobes are anatomically contiguous. But there was no evidence of STROKE at that time, no bleeding, and no mass. At that time there was a working diagnosis of Lyme Disease. Is there a history of possible Lyme exposure PRE-2008? XXXXXXX is not terribly well known for that sort of infection. I'm assuming he was tested for cryptococcal infection although that too presents more as a meningitic infection....but XXXXXXX is a lot closer to the SW U.S. which is the place for cryptococcus.
How about fungal infections? He probably was tested for the usual suspects but did your father spend any time in Northern climates such as the OHIO RIVER VALLEY region where things such as BLASTOMYCOSIS is indigenous? Then, again, a 10 year unchecked evolution of a fungal infection is difficult to envision although with an intact immune system....not impossible at all. And he was tested for the treponema pallidum in terms of tertiary syphilis though the index of suspicious for this is extremely low given the MRI appearance of the brain and the lack of gummatous lesions....
I'm also aware that 14-3-3 testing was done. I rotated as a resident with one of CWRU's premier PRION experts who was intensely working in the 90's with the 14-3-3 brain proteins as markers for CJD. Typically CJD (as most classical PRION diseases) has a short duration expectancy in the host...although there are some subtypes of CJD which can be long or very long durations. That's why it interests me a bit more the testing was done and whether or not they tested specific ISOFORM SUBTYPES of the 14-3-3 protein as there are a few found to be highly correlated and sensitive with prion diseases while others are more commonly found in other neurodegenerative diseases such as Alzheimer's or Parkinson's Disease.
Was he ever tried on any type of H1 blocker antihistamine (Benadryl) compound or maybe either a 2nd or 3rd generation drug when the initial 14-3-3 testing showed POSITIVE?
You also said that they had tested for arboviruses (well, you mentioned mosquito) and that was a dead end as well? And they also did brain biopsies? Is that accurate? Did they take samples from the swollen areas of the right temporal and/or right occipital lobes?
I'm sorry for the quantity of questions but I'll stop here and let you answer a few of these questions (HOPEFULLY, ALL IF YOU CAN!!) HAHA!
I believe I asked you this before but I don't recall your response....did anyone talk about
No vitamin D levels that I could find in the uploaded data.
Unfortunately, going to the picnic site is not something that's really part of this platform's consultative services. I'm know you can appreciate the reasons for that based upon your question in the very beginning of this entire thread as to whether or not you might be "overreaching." I understand what your meaning was. This is by no means a garden variety case and cannot be resolved by ANY physician on this network without delving into the mountain of testing and history that goes into your father's journey not to mention the fact that there's really no resolution in sight
You are welcome to transfer files here as attachments but I would not recommend that because honestly, this is not the most efficient way to handle this sort of consultation that really is best done by other means aside from text messaging back and forth.
Quite honestly, the amount of information we've already covered is quite extensive. I do not believe you will glean more information than what I've provided (and BTW, I have tons of questions more as you can tell from the ones I've asked) but please do go ahead and give me your responses to the present questions I asked and I will then, try to tie things together for you in a final response before requesting that we close this particular thread.
Cheers my dear.
This query has to this point required 505 minutes of professional time to research, assimilate, and file a response.
Lacking information from his latest PET scan and other records
Detailed Answer:
Good evening (Yes, the name of the hospital I was born at does make one giggle doesn't it?... perhaps, NOT in England where the name most probably derives?? :0 ).
I've gone through the uploaded files that you've provided but I do not see anything that's been aggregated since my last review 24 hrs. ago.
The latest PET scan that I can view is cut off at the bottom and I cannot see the radiologist's complete IMPRESSION.
I'm also wondering if there is a 2nd page to an MRI report which I believe was accessioned on or about April 2018. I cannot see any signature by a radiologist nor any IMPRESSION which typically follows the section entitled FINDINGS. Also, the radiologist made no comparative analysis with the MRI report of 2009 which was one of the things they were requested to do which would be interesting to read.
Also, I understand that you're having some technical issues with words/phrases that are apparently being transcribed into SYMBOLS on this platform and your last message contains a number of these strange "hieroglyphics"....HA! It is for the most part understandable by not fully....but enough.
I understand that he was checked for the usual suspects of viruses which came back negative. He was NOT checked for ADENOVIRUS...which funnily enough is the one virus that my patient who was encephalitic and actually virtually comatose the whole time he was in the hospital (never really recovered consciousness before he was transferred to Long term care) ended up testing POSITIVE for while he was negative (just like your father) to everything else. I would've elected to trial ACYCLOVIR as an IV for at least 7-10 days...but based on everything I'm gathering....I would say the likelihood of him having responded would've been the same as he did to the tablet form. I may have also gone for viral cultures for measles although this presents more as a MENINGITIC PROCESS rather than ENCEPHALITIC.
I'm impressed with the initial scans in 2008 and 2009 of the focal gyral swellings in the temporal and occipital lobes. Makes sense since those lobes are anatomically contiguous. But there was no evidence of STROKE at that time, no bleeding, and no mass. At that time there was a working diagnosis of Lyme Disease. Is there a history of possible Lyme exposure PRE-2008? XXXXXXX is not terribly well known for that sort of infection. I'm assuming he was tested for cryptococcal infection although that too presents more as a meningitic infection....but XXXXXXX is a lot closer to the SW U.S. which is the place for cryptococcus.
How about fungal infections? He probably was tested for the usual suspects but did your father spend any time in Northern climates such as the OHIO RIVER VALLEY region where things such as BLASTOMYCOSIS is indigenous? Then, again, a 10 year unchecked evolution of a fungal infection is difficult to envision although with an intact immune system....not impossible at all. And he was tested for the treponema pallidum in terms of tertiary syphilis though the index of suspicious for this is extremely low given the MRI appearance of the brain and the lack of gummatous lesions....
I'm also aware that 14-3-3 testing was done. I rotated as a resident with one of CWRU's premier PRION experts who was intensely working in the 90's with the 14-3-3 brain proteins as markers for CJD. Typically CJD (as most classical PRION diseases) has a short duration expectancy in the host...although there are some subtypes of CJD which can be long or very long durations. That's why it interests me a bit more the testing was done and whether or not they tested specific ISOFORM SUBTYPES of the 14-3-3 protein as there are a few found to be highly correlated and sensitive with prion diseases while others are more commonly found in other neurodegenerative diseases such as Alzheimer's or Parkinson's Disease.
Was he ever tried on any type of H1 blocker antihistamine (Benadryl) compound or maybe either a 2nd or 3rd generation drug when the initial 14-3-3 testing showed POSITIVE?
You also said that they had tested for arboviruses (well, you mentioned mosquito) and that was a dead end as well? And they also did brain biopsies? Is that accurate? Did they take samples from the swollen areas of the right temporal and/or right occipital lobes?
I'm sorry for the quantity of questions but I'll stop here and let you answer a few of these questions (HOPEFULLY, ALL IF YOU CAN!!) HAHA!
I believe I asked you this before but I don't recall your response....did anyone talk about
No vitamin D levels that I could find in the uploaded data.
Unfortunately, going to the picnic site is not something that's really part of this platform's consultative services. I'm know you can appreciate the reasons for that based upon your question in the very beginning of this entire thread as to whether or not you might be "overreaching." I understand what your meaning was. This is by no means a garden variety case and cannot be resolved by ANY physician on this network without delving into the mountain of testing and history that goes into your father's journey not to mention the fact that there's really no resolution in sight
You are welcome to transfer files here as attachments but I would not recommend that because honestly, this is not the most efficient way to handle this sort of consultation that really is best done by other means aside from text messaging back and forth.
Quite honestly, the amount of information we've already covered is quite extensive. I do not believe you will glean more information than what I've provided (and BTW, I have tons of questions more as you can tell from the ones I've asked) but please do go ahead and give me your responses to the present questions I asked and I will then, try to tie things together for you in a final response before requesting that we close this particular thread.
Cheers my dear.
This query has to this point required 505 minutes of professional time to research, assimilate, and file a response.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
Lacking information from his latest PET scan and other records
Detailed Answer:
Good evening (Yes, the name of the hospital I was born at does make one giggle doesn't it?... perhaps, NOT in England where the name most probably derives?? :0 ).
I've gone through the uploaded files that you've provided but I do not see anything that's been aggregated since my last review 24 hrs. ago.
The latest PET scan that I can view is cut off at the bottom and I cannot see the radiologist's complete IMPRESSION.
I'm also wondering if there is a 2nd page to an MRI report which I believe was accessioned on or about April 2018. I cannot see any signature by a radiologist nor any IMPRESSION which typically follows the section entitled FINDINGS. Also, the radiologist made no comparative analysis with the MRI report of 2009 which was one of the things they were requested to do which would be interesting to read.
Also, I understand that you're having some technical issues with words/phrases that are apparently being transcribed into SYMBOLS on this platform and your last message contains a number of these strange "hieroglyphics"....HA! It is for the most part understandable by not fully....but enough.
I understand that he was checked for the usual suspects of viruses which came back negative. He was NOT checked for ADENOVIRUS...which funnily enough is the one virus that my patient who was encephalitic and actually virtually comatose the whole time he was in the hospital (never really recovered consciousness before he was transferred to Long term care) ended up testing POSITIVE for while he was negative (just like your father) to everything else. I would've elected to trial ACYCLOVIR as an IV for at least 7-10 days...but based on everything I'm gathering....I would say the likelihood of him having responded would've been the same as he did to the tablet form. I may have also gone for viral cultures for measles although this presents more as a MENINGITIC PROCESS rather than ENCEPHALITIC.
I'm impressed with the initial scans in 2008 and 2009 of the focal gyral swellings in the temporal and occipital lobes. Makes sense since those lobes are anatomically contiguous. But there was no evidence of STROKE at that time, no bleeding, and no mass. At that time there was a working diagnosis of Lyme Disease. Is there a history of possible Lyme exposure PRE-2008? XXXXXXX is not terribly well known for that sort of infection. I'm assuming he was tested for cryptococcal infection although that too presents more as a meningitic infection....but XXXXXXX is a lot closer to the SW U.S. which is the place for cryptococcus.
How about fungal infections? He probably was tested for the usual suspects but did your father spend any time in Northern climates such as the OHIO RIVER VALLEY region where things such as BLASTOMYCOSIS is indigenous? Then, again, a 10 year unchecked evolution of a fungal infection is difficult to envision although with an intact immune system....not impossible at all. And he was tested for the treponema pallidum in terms of tertiary syphilis though the index of suspicious for this is extremely low given the MRI appearance of the brain and the lack of gummatous lesions....
I'm also aware that 14-3-3 testing was done. I rotated as a resident with one of CWRU's premier PRION experts who was intensely working in the 90's with the 14-3-3 brain proteins as markers for CJD. Typically CJD (as most classical PRION diseases) has a short duration expectancy in the host...although there are some subtypes of CJD which can be long or very long durations. That's why it interests me a bit more the testing was done and whether or not they tested specific ISOFORM SUBTYPES of the 14-3-3 protein as there are a few found to be highly correlated and sensitive with prion diseases while others are more commonly found in other neurodegenerative diseases such as Alzheimer's or Parkinson's Disease.
Was he ever tried on any type of H1 blocker antihistamine (Benadryl) compound or maybe either a 2nd or 3rd generation drug when the initial 14-3-3 testing showed POSITIVE?
You also said that they had tested for arboviruses (well, you mentioned mosquito) and that was a dead end as well? And they also did brain biopsies? Is that accurate? Did they take samples from the swollen areas of the right temporal and/or right occipital lobes?
I'm sorry for the quantity of questions but I'll stop here and let you answer a few of these questions (HOPEFULLY, ALL IF YOU CAN!!) HAHA!
I believe I asked you this before but I don't recall your response....did anyone talk about
No vitamin D levels that I could find in the uploaded data.
Unfortunately, going to the picnic site is not something that's really part of this platform's consultative services. I'm know you can appreciate the reasons for that based upon your question in the very beginning of this entire thread as to whether or not you might be "overreaching." I understand what your meaning was. This is by no means a garden variety case and cannot be resolved by ANY physician on this network without delving into the mountain of testing and history that goes into your father's journey not to mention the fact that there's really no resolution in sight
You are welcome to transfer files here as attachments but I would not recommend that because honestly, this is not the most efficient way to handle this sort of consultation that really is best done by other means aside from text messaging back and forth.
Quite honestly, the amount of information we've already covered is quite extensive. I do not believe you will glean more information than what I've provided (and BTW, I have tons of questions more as you can tell from the ones I've asked) but please do go ahead and give me your responses to the present questions I asked and I will then, try to tie things together for you in a final response before requesting that we close this particular thread.
Cheers my dear.
This query has to this point required 505 minutes of professional time to research, assimilate, and file a response.
Lacking information from his latest PET scan and other records
Detailed Answer:
Good evening (Yes, the name of the hospital I was born at does make one giggle doesn't it?... perhaps, NOT in England where the name most probably derives?? :0 ).
I've gone through the uploaded files that you've provided but I do not see anything that's been aggregated since my last review 24 hrs. ago.
The latest PET scan that I can view is cut off at the bottom and I cannot see the radiologist's complete IMPRESSION.
I'm also wondering if there is a 2nd page to an MRI report which I believe was accessioned on or about April 2018. I cannot see any signature by a radiologist nor any IMPRESSION which typically follows the section entitled FINDINGS. Also, the radiologist made no comparative analysis with the MRI report of 2009 which was one of the things they were requested to do which would be interesting to read.
Also, I understand that you're having some technical issues with words/phrases that are apparently being transcribed into SYMBOLS on this platform and your last message contains a number of these strange "hieroglyphics"....HA! It is for the most part understandable by not fully....but enough.
I understand that he was checked for the usual suspects of viruses which came back negative. He was NOT checked for ADENOVIRUS...which funnily enough is the one virus that my patient who was encephalitic and actually virtually comatose the whole time he was in the hospital (never really recovered consciousness before he was transferred to Long term care) ended up testing POSITIVE for while he was negative (just like your father) to everything else. I would've elected to trial ACYCLOVIR as an IV for at least 7-10 days...but based on everything I'm gathering....I would say the likelihood of him having responded would've been the same as he did to the tablet form. I may have also gone for viral cultures for measles although this presents more as a MENINGITIC PROCESS rather than ENCEPHALITIC.
I'm impressed with the initial scans in 2008 and 2009 of the focal gyral swellings in the temporal and occipital lobes. Makes sense since those lobes are anatomically contiguous. But there was no evidence of STROKE at that time, no bleeding, and no mass. At that time there was a working diagnosis of Lyme Disease. Is there a history of possible Lyme exposure PRE-2008? XXXXXXX is not terribly well known for that sort of infection. I'm assuming he was tested for cryptococcal infection although that too presents more as a meningitic infection....but XXXXXXX is a lot closer to the SW U.S. which is the place for cryptococcus.
How about fungal infections? He probably was tested for the usual suspects but did your father spend any time in Northern climates such as the OHIO RIVER VALLEY region where things such as BLASTOMYCOSIS is indigenous? Then, again, a 10 year unchecked evolution of a fungal infection is difficult to envision although with an intact immune system....not impossible at all. And he was tested for the treponema pallidum in terms of tertiary syphilis though the index of suspicious for this is extremely low given the MRI appearance of the brain and the lack of gummatous lesions....
I'm also aware that 14-3-3 testing was done. I rotated as a resident with one of CWRU's premier PRION experts who was intensely working in the 90's with the 14-3-3 brain proteins as markers for CJD. Typically CJD (as most classical PRION diseases) has a short duration expectancy in the host...although there are some subtypes of CJD which can be long or very long durations. That's why it interests me a bit more the testing was done and whether or not they tested specific ISOFORM SUBTYPES of the 14-3-3 protein as there are a few found to be highly correlated and sensitive with prion diseases while others are more commonly found in other neurodegenerative diseases such as Alzheimer's or Parkinson's Disease.
Was he ever tried on any type of H1 blocker antihistamine (Benadryl) compound or maybe either a 2nd or 3rd generation drug when the initial 14-3-3 testing showed POSITIVE?
You also said that they had tested for arboviruses (well, you mentioned mosquito) and that was a dead end as well? And they also did brain biopsies? Is that accurate? Did they take samples from the swollen areas of the right temporal and/or right occipital lobes?
I'm sorry for the quantity of questions but I'll stop here and let you answer a few of these questions (HOPEFULLY, ALL IF YOU CAN!!) HAHA!
I believe I asked you this before but I don't recall your response....did anyone talk about
No vitamin D levels that I could find in the uploaded data.
Unfortunately, going to the picnic site is not something that's really part of this platform's consultative services. I'm know you can appreciate the reasons for that based upon your question in the very beginning of this entire thread as to whether or not you might be "overreaching." I understand what your meaning was. This is by no means a garden variety case and cannot be resolved by ANY physician on this network without delving into the mountain of testing and history that goes into your father's journey not to mention the fact that there's really no resolution in sight
You are welcome to transfer files here as attachments but I would not recommend that because honestly, this is not the most efficient way to handle this sort of consultation that really is best done by other means aside from text messaging back and forth.
Quite honestly, the amount of information we've already covered is quite extensive. I do not believe you will glean more information than what I've provided (and BTW, I have tons of questions more as you can tell from the ones I've asked) but please do go ahead and give me your responses to the present questions I asked and I will then, try to tie things together for you in a final response before requesting that we close this particular thread.
Cheers my dear.
This query has to this point required 505 minutes of professional time to research, assimilate, and file a response.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Answered by
Get personalised answers from verified doctor in minutes across 80+ specialties
