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I Ve Been Communicating With Dr. XXXXXXX Saghafi Concerning New
Question: I've been communicating with Dr. XXXXXXX Saghafi concerning new and rapidly progressing weakness in my right hand and arm and am now having fairly constant "Charlie horses". My initial Parkinson's symptoms were in 20111 with loss of sense of smell and a tremor in my right index finger at that time. I've had an abnormal EMG, Anti-MAG and Ganglioside testing that were both normal. I'm confused and frustrated because I feel very strongly that I am losing control of my body. I was an alcoholic but have been sober since 1998, a former triathlete, and a former nurse. I had mentioned to Dr. XXXXXXX Saghafi that I have ancestors who had Parkinson's, he asked if any had ALS, I have no idea. My great Grandmother, the only one I didn't know, was diagnosed with paralysis Agitans which, through my nursing training, I equate with Parkinson's. I'm VERY concerned that I may have ALS and I'm needing direction on the next course of action to explore.
I've been communicating with Dr. XXXXXXX Saghafi concerning new and rapidly progressing weakness in my right hand and arm and am now having fairly constant "Charlie horses". My initial Parkinson's symptoms were in 20111 with loss of sense of smell and a tremor in my right index finger at that time. I've had an abnormal EMG, Anti-MAG and Ganglioside testing that were both normal. I'm confused and frustrated because I feel very strongly that I am losing control of my body. I was an alcoholic but have been sober since 1998, a former triathlete, and a former nurse. I had mentioned to Dr. XXXXXXX Saghafi that I have ancestors who had Parkinson's, he asked if any had ALS, I have no idea. My great Grandmother, the only one I didn't know, was diagnosed with paralysis Agitans which, through my nursing training, I equate with Parkinson's. I'm VERY concerned that I may have ALS and I'm needing direction on the next course of action to explore.
Brief Answer:
I do not believe ALS ranks as high any more with newer information
Detailed Answer:
Good morning sir,
Thank you for reaching out once again. Have you had any type of conversation with your neurologist about your condition? I went back and reread your EMG findings which certainly seemed to highly suggest the presence of both ulnar neuropathy as well as CTS. It did not say anything really about findings that seemed to be consistent with MOTOR NEURON DISEASE of the ALS type. And so I see that as a positive detail in your case. Usually, good electromyographers are able to make assessments based on the electrical status of a study whether there seem to be characteristics sufficient enough to include motor neuron disease into a differential. In this case a median and ulnar neuropathy were diagnosed only.
I reread the EMG conclusions and did not see any mention about fibrillation potentials or sharp waves which were made part of the revised El Escorial electrical criteria in ALS patients (or suspected). The fact that no mention is made in the conclusions of these entities suggests to me that the EMG did not possess or demonstrate any significant fibrillation potentials nor sharp spikes. Again, those findings are pretty typical in patients with ALS so their absence to me is pretty tell tale that the electromyographer did not really seem impressed with the study as showing any type of motor neuron disease.
And so I think what your EMG really shows at this point are cases of CARPAL TUNNEL SYNDROME and ULNAR NEUROPATHY BUT i don't see satisfying criteria to make the call for PROBABLE OR LIKELY ALS or some other form of MOTOR NEURON DISEASE.
I believe the next step you must take is to have a meeting with your neurologist and to ask him point blank why you seem to be having these more "out front" changes occurring so rapidly and at such a young age. And see what he says. You should explain to him that your concern is that you have ALS and PARKINSON'S possibly at the same time...which is a bit off the beaten trail for sure....but it can happen.
Ask him to explain your diagnosis to you and why it seems to be so very aggressive in this case. With the hand atrophy occurring as it appears in the photographs....I would suggest that you speak with your neurologist to see if he could support you possibly getting surgerized for both these conditions since one of the criteria for rapid surgery is sudden weakness in the limbs as well as loss of strength. And clearly it seems you've been losing strength in the upper extremities for at least a little while and this would automatically almost prompt consideration for STAT surgery to release both the carpal as well as ulnar pathologies of some type of entrapment.
If your neurologist is of the opinion that you are NOT suffering the salient clinical features ascribable to ALS then, I would consider an MRI of the brain and potentially the cervical spine as well.
Just so you can see a small list of ALS mimickers ....here they are:
Adrenoleukodystrophy
Central nervous system tumors
Cervical and lumbar myelopathy
Chronic inflammatory demyelinating polyradiculoneuropathy
Human Immunodeficiency Virus (HIV)
Inflammatory myopathies
Lambert-Eaton Syndrome
Lyme disease
Multifocal motor neuropathy with conduction block
Multiple Sclerosis
Myasthenia gravis
Polyradiculopathy
Syringomyelia
However, all this being said I need to emphasize that you have a movement disorder specialist at a reputable and renowned academic center that has done an EMG/NCV study on it that does not suggest the presence of fibrillation potentials (not mentioned), no spike complexes or sharp waves (not mentioned) and almost as importantly the reader did not include motor neuron disease in his conclusions as to what the study reminded him of...which to me is very telltale sign.
Most ALS or motor neuron disease really involves loss of muscle mass and function in the LEGS well before involving the hands. I don't get that flavor of problem here. You've not mentioned stumbling, tripping, or falling.
But the next move on your part, in my opinion, is to schedule a time to speak with your neurologist either by phone or in person about your concerns and to see if there isn't an opinion on his part that corresponds to anything I'm saying with respect to your hands and what the EMG shows as well as HIS CLINICAL EXAMINATION (which I'm not privy to have performed).
As always, if I've provided useful or helpful information to your questions could you do me the utmost of favors in 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 if you'd care to drop me a line at www.bit.ly/drdariushsaghafi as to how you're feeling down the road and how things turned 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 and given you a better direction as to which way a conversation would best be had with your doctor.
My Doctor instinct tells me that things are not nearly as they seem given some of the newer information you're showing.. :0
This query required 60 minutes of professional time to research, assimilate, and file a response.
I do not believe ALS ranks as high any more with newer information
Detailed Answer:
Good morning sir,
Thank you for reaching out once again. Have you had any type of conversation with your neurologist about your condition? I went back and reread your EMG findings which certainly seemed to highly suggest the presence of both ulnar neuropathy as well as CTS. It did not say anything really about findings that seemed to be consistent with MOTOR NEURON DISEASE of the ALS type. And so I see that as a positive detail in your case. Usually, good electromyographers are able to make assessments based on the electrical status of a study whether there seem to be characteristics sufficient enough to include motor neuron disease into a differential. In this case a median and ulnar neuropathy were diagnosed only.
I reread the EMG conclusions and did not see any mention about fibrillation potentials or sharp waves which were made part of the revised El Escorial electrical criteria in ALS patients (or suspected). The fact that no mention is made in the conclusions of these entities suggests to me that the EMG did not possess or demonstrate any significant fibrillation potentials nor sharp spikes. Again, those findings are pretty typical in patients with ALS so their absence to me is pretty tell tale that the electromyographer did not really seem impressed with the study as showing any type of motor neuron disease.
And so I think what your EMG really shows at this point are cases of CARPAL TUNNEL SYNDROME and ULNAR NEUROPATHY BUT i don't see satisfying criteria to make the call for PROBABLE OR LIKELY ALS or some other form of MOTOR NEURON DISEASE.
I believe the next step you must take is to have a meeting with your neurologist and to ask him point blank why you seem to be having these more "out front" changes occurring so rapidly and at such a young age. And see what he says. You should explain to him that your concern is that you have ALS and PARKINSON'S possibly at the same time...which is a bit off the beaten trail for sure....but it can happen.
Ask him to explain your diagnosis to you and why it seems to be so very aggressive in this case. With the hand atrophy occurring as it appears in the photographs....I would suggest that you speak with your neurologist to see if he could support you possibly getting surgerized for both these conditions since one of the criteria for rapid surgery is sudden weakness in the limbs as well as loss of strength. And clearly it seems you've been losing strength in the upper extremities for at least a little while and this would automatically almost prompt consideration for STAT surgery to release both the carpal as well as ulnar pathologies of some type of entrapment.
If your neurologist is of the opinion that you are NOT suffering the salient clinical features ascribable to ALS then, I would consider an MRI of the brain and potentially the cervical spine as well.
Just so you can see a small list of ALS mimickers ....here they are:
Adrenoleukodystrophy
Central nervous system tumors
Cervical and lumbar myelopathy
Chronic inflammatory demyelinating polyradiculoneuropathy
Human Immunodeficiency Virus (HIV)
Inflammatory myopathies
Lambert-Eaton Syndrome
Lyme disease
Multifocal motor neuropathy with conduction block
Multiple Sclerosis
Myasthenia gravis
Polyradiculopathy
Syringomyelia
However, all this being said I need to emphasize that you have a movement disorder specialist at a reputable and renowned academic center that has done an EMG/NCV study on it that does not suggest the presence of fibrillation potentials (not mentioned), no spike complexes or sharp waves (not mentioned) and almost as importantly the reader did not include motor neuron disease in his conclusions as to what the study reminded him of...which to me is very telltale sign.
Most ALS or motor neuron disease really involves loss of muscle mass and function in the LEGS well before involving the hands. I don't get that flavor of problem here. You've not mentioned stumbling, tripping, or falling.
But the next move on your part, in my opinion, is to schedule a time to speak with your neurologist either by phone or in person about your concerns and to see if there isn't an opinion on his part that corresponds to anything I'm saying with respect to your hands and what the EMG shows as well as HIS CLINICAL EXAMINATION (which I'm not privy to have performed).
As always, if I've provided useful or helpful information to your questions could you do me the utmost of favors in 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 if you'd care to drop me a line at www.bit.ly/drdariushsaghafi as to how you're feeling down the road and how things turned 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 and given you a better direction as to which way a conversation would best be had with your doctor.
My Doctor instinct tells me that things are not nearly as they seem given some of the newer information you're showing.. :0
This query required 60 minutes of professional time to research, assimilate, and file a response.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
I do not believe ALS ranks as high any more with newer information
Detailed Answer:
Good morning sir,
Thank you for reaching out once again. Have you had any type of conversation with your neurologist about your condition? I went back and reread your EMG findings which certainly seemed to highly suggest the presence of both ulnar neuropathy as well as CTS. It did not say anything really about findings that seemed to be consistent with MOTOR NEURON DISEASE of the ALS type. And so I see that as a positive detail in your case. Usually, good electromyographers are able to make assessments based on the electrical status of a study whether there seem to be characteristics sufficient enough to include motor neuron disease into a differential. In this case a median and ulnar neuropathy were diagnosed only.
I reread the EMG conclusions and did not see any mention about fibrillation potentials or sharp waves which were made part of the revised El Escorial electrical criteria in ALS patients (or suspected). The fact that no mention is made in the conclusions of these entities suggests to me that the EMG did not possess or demonstrate any significant fibrillation potentials nor sharp spikes. Again, those findings are pretty typical in patients with ALS so their absence to me is pretty tell tale that the electromyographer did not really seem impressed with the study as showing any type of motor neuron disease.
And so I think what your EMG really shows at this point are cases of CARPAL TUNNEL SYNDROME and ULNAR NEUROPATHY BUT i don't see satisfying criteria to make the call for PROBABLE OR LIKELY ALS or some other form of MOTOR NEURON DISEASE.
I believe the next step you must take is to have a meeting with your neurologist and to ask him point blank why you seem to be having these more "out front" changes occurring so rapidly and at such a young age. And see what he says. You should explain to him that your concern is that you have ALS and PARKINSON'S possibly at the same time...which is a bit off the beaten trail for sure....but it can happen.
Ask him to explain your diagnosis to you and why it seems to be so very aggressive in this case. With the hand atrophy occurring as it appears in the photographs....I would suggest that you speak with your neurologist to see if he could support you possibly getting surgerized for both these conditions since one of the criteria for rapid surgery is sudden weakness in the limbs as well as loss of strength. And clearly it seems you've been losing strength in the upper extremities for at least a little while and this would automatically almost prompt consideration for STAT surgery to release both the carpal as well as ulnar pathologies of some type of entrapment.
If your neurologist is of the opinion that you are NOT suffering the salient clinical features ascribable to ALS then, I would consider an MRI of the brain and potentially the cervical spine as well.
Just so you can see a small list of ALS mimickers ....here they are:
Adrenoleukodystrophy
Central nervous system tumors
Cervical and lumbar myelopathy
Chronic inflammatory demyelinating polyradiculoneuropathy
Human Immunodeficiency Virus (HIV)
Inflammatory myopathies
Lambert-Eaton Syndrome
Lyme disease
Multifocal motor neuropathy with conduction block
Multiple Sclerosis
Myasthenia gravis
Polyradiculopathy
Syringomyelia
However, all this being said I need to emphasize that you have a movement disorder specialist at a reputable and renowned academic center that has done an EMG/NCV study on it that does not suggest the presence of fibrillation potentials (not mentioned), no spike complexes or sharp waves (not mentioned) and almost as importantly the reader did not include motor neuron disease in his conclusions as to what the study reminded him of...which to me is very telltale sign.
Most ALS or motor neuron disease really involves loss of muscle mass and function in the LEGS well before involving the hands. I don't get that flavor of problem here. You've not mentioned stumbling, tripping, or falling.
But the next move on your part, in my opinion, is to schedule a time to speak with your neurologist either by phone or in person about your concerns and to see if there isn't an opinion on his part that corresponds to anything I'm saying with respect to your hands and what the EMG shows as well as HIS CLINICAL EXAMINATION (which I'm not privy to have performed).
As always, if I've provided useful or helpful information to your questions could you do me the utmost of favors in 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 if you'd care to drop me a line at www.bit.ly/drdariushsaghafi as to how you're feeling down the road and how things turned 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 and given you a better direction as to which way a conversation would best be had with your doctor.
My Doctor instinct tells me that things are not nearly as they seem given some of the newer information you're showing.. :0
This query required 60 minutes of professional time to research, assimilate, and file a response.
I do not believe ALS ranks as high any more with newer information
Detailed Answer:
Good morning sir,
Thank you for reaching out once again. Have you had any type of conversation with your neurologist about your condition? I went back and reread your EMG findings which certainly seemed to highly suggest the presence of both ulnar neuropathy as well as CTS. It did not say anything really about findings that seemed to be consistent with MOTOR NEURON DISEASE of the ALS type. And so I see that as a positive detail in your case. Usually, good electromyographers are able to make assessments based on the electrical status of a study whether there seem to be characteristics sufficient enough to include motor neuron disease into a differential. In this case a median and ulnar neuropathy were diagnosed only.
I reread the EMG conclusions and did not see any mention about fibrillation potentials or sharp waves which were made part of the revised El Escorial electrical criteria in ALS patients (or suspected). The fact that no mention is made in the conclusions of these entities suggests to me that the EMG did not possess or demonstrate any significant fibrillation potentials nor sharp spikes. Again, those findings are pretty typical in patients with ALS so their absence to me is pretty tell tale that the electromyographer did not really seem impressed with the study as showing any type of motor neuron disease.
And so I think what your EMG really shows at this point are cases of CARPAL TUNNEL SYNDROME and ULNAR NEUROPATHY BUT i don't see satisfying criteria to make the call for PROBABLE OR LIKELY ALS or some other form of MOTOR NEURON DISEASE.
I believe the next step you must take is to have a meeting with your neurologist and to ask him point blank why you seem to be having these more "out front" changes occurring so rapidly and at such a young age. And see what he says. You should explain to him that your concern is that you have ALS and PARKINSON'S possibly at the same time...which is a bit off the beaten trail for sure....but it can happen.
Ask him to explain your diagnosis to you and why it seems to be so very aggressive in this case. With the hand atrophy occurring as it appears in the photographs....I would suggest that you speak with your neurologist to see if he could support you possibly getting surgerized for both these conditions since one of the criteria for rapid surgery is sudden weakness in the limbs as well as loss of strength. And clearly it seems you've been losing strength in the upper extremities for at least a little while and this would automatically almost prompt consideration for STAT surgery to release both the carpal as well as ulnar pathologies of some type of entrapment.
If your neurologist is of the opinion that you are NOT suffering the salient clinical features ascribable to ALS then, I would consider an MRI of the brain and potentially the cervical spine as well.
Just so you can see a small list of ALS mimickers ....here they are:
Adrenoleukodystrophy
Central nervous system tumors
Cervical and lumbar myelopathy
Chronic inflammatory demyelinating polyradiculoneuropathy
Human Immunodeficiency Virus (HIV)
Inflammatory myopathies
Lambert-Eaton Syndrome
Lyme disease
Multifocal motor neuropathy with conduction block
Multiple Sclerosis
Myasthenia gravis
Polyradiculopathy
Syringomyelia
However, all this being said I need to emphasize that you have a movement disorder specialist at a reputable and renowned academic center that has done an EMG/NCV study on it that does not suggest the presence of fibrillation potentials (not mentioned), no spike complexes or sharp waves (not mentioned) and almost as importantly the reader did not include motor neuron disease in his conclusions as to what the study reminded him of...which to me is very telltale sign.
Most ALS or motor neuron disease really involves loss of muscle mass and function in the LEGS well before involving the hands. I don't get that flavor of problem here. You've not mentioned stumbling, tripping, or falling.
But the next move on your part, in my opinion, is to schedule a time to speak with your neurologist either by phone or in person about your concerns and to see if there isn't an opinion on his part that corresponds to anything I'm saying with respect to your hands and what the EMG shows as well as HIS CLINICAL EXAMINATION (which I'm not privy to have performed).
As always, if I've provided useful or helpful information to your questions could you do me the utmost of favors in 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 if you'd care to drop me a line at www.bit.ly/drdariushsaghafi as to how you're feeling down the road and how things turned 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 and given you a better direction as to which way a conversation would best be had with your doctor.
My Doctor instinct tells me that things are not nearly as they seem given some of the newer information you're showing.. :0
This query required 60 minutes of professional time to research, assimilate, and file a response.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Answered by
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