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I Have Spoken With My Movement Disorder Specialist About My
Question: I have spoken with my movement disorder specialist about my extremity weakness and she has set a plan for diagnosis. I am now having fasciculations on my upper back and torso. This is new. Sinemet has been increased to 1.5 tabs 4 times a day and discontinued selegiline 5mg QD. The plan at this point is to repeat EMG/NCS in August. My weakness continues to progress. I can no long tie a bowtie or necktie, button buttons, I have absolutely no strength at all in my right hand and can not longer lift my right arm above shoulder height without assisting with my left arm. over the past 3 years I have fallen 42 times, I skid my feet though I do not shuffle. My balance is horrible and I am having to use forearm crutches and I cannot seem to coordinate a cane and am unable to use it in my right hand (I'm VERY right handed) and cannot seem to work out a rhythm using my left hand. As an aside I had Botox injections into my parotid glands for drooling on Wednesday of last week. I do often freeze when walking and have significant word finding difficulty.
I have spoken with my movement disorder specialist about my extremity weakness and she has set a plan for diagnosis. I am now having fasciculations on my upper back and torso. This is new. Sinemet has been increased to 1.5 tabs 4 times a day and discontinued selegiline 5mg QD. The plan at this point is to repeat EMG/NCS in August. My weakness continues to progress. I can no long tie a bowtie or necktie, button buttons, I have absolutely no strength at all in my right hand and can not longer lift my right arm above shoulder height without assisting with my left arm. over the past 3 years I have fallen 42 times, I skid my feet though I do not shuffle. My balance is horrible and I am having to use forearm crutches and I cannot seem to coordinate a cane and am unable to use it in my right hand (I'm VERY right handed) and cannot seem to work out a rhythm using my left hand. As an aside I had Botox injections into my parotid glands for drooling on Wednesday of last week. I do often freeze when walking and have significant word finding difficulty.
Brief Answer:
Have read comments and is there a SPECIFIC question to answer?
Detailed Answer:
Good evening (From XXXXXXX Italy)
I am speaking to you from at least 6 hrs. ahead of EASTERN STANDARD TIME in the country known as THE BOOT! LOL....I am here (still) with my wife and daughter having flown out this morning. I'm on the launch pad for tomorrow. My "Bambina" as one of the locals called her (she's 24!) took 2nd place in the XXXXXXX International Invitational Crossfit Games for 2019 and so we're just beaming over here...sorry for that shameless plus for my daughter. I knew that as a nurse, healer, and HIGHLY TRAINED athlete yourself you'd appreciate hearing when a young woman accomplishes something on that order. She is now hungry for that 1st spot on the podium that she'll get a couple of chances at coming up at the Rogue International Throw down in a couple of weeks. she actually qualified 1st out of an invited field of 100 and then, the Crossfit Games themselves in XXXXXXX WI in July which is where some ridiculous cash prizes can be had for top 20 placers.
But let's now talk about what's going on in your world. I've read your comments...I was trying to tease out a question but was unable because obviously, you've got questions, concerns, and thoughts so I'm going to let you lead the orchestra here and direct me as to what you would like to opine on since now there've been some additional moves by your neurologist.
I also reread..TWICE...everything we've been discussing in our threads and if we just go on the basis of last recommendations MY QUESTION to you would be if you followed through with the part of the plan I suggested where you get to sit down in a POW WOW session with your neurologist and just ask a few tough questions? I take it from the first statement in your comments above that you did have such a discussion because you state, "I have spoken with my movement disorder specialist about my extremity weakness and she has set a plan for diagnosis."
I understand that another EMG/NCV is set for August. How about your sharing with me your neurologist's thought on whether or not you are demonstrating any of the CLINICAL CRITERIA for UPPER MOTOR NEURON SIGNS? In other words, your description of what's going on seems to pretty much describe the presence of MUSCLE WEAKNESS both in the upper extremities and also lowers along with fasciculations plus you've shown me atrophy in photos (which has been attributed to CTS and/or ULNAR neuropathy...but it could also be NOT related to those 2 conditions as well).
I am really at a loss to explain why the EMG/NCV is not picking anything that validates weakness in the muscles as well as the fasciculations....that's seems odd to me. Has you neurologist SEEN the fascis? How about HYPERREFLEXIA? So weakness, fasciculations, and HYPERREFLEXIA...does your neurologist believe you possess these items or not as of this moment?
Did your neurologist tell you why they wanted to wait until August to redo the EMG/NCV and how about an MRI of the cervical spinal cord and then, the brain as well just to see what those areas show? If they are not impressed with your picture enough to order the studies did they share with you why not? You obviously do not NEED an EMG/NCV to come to a conclusion of MND but most people will never make a diagnosis of MND with the type of EMG you currently have oon file. I'd also consider asking the neurologist if you could get another electromyographer to do the study.....obviously, there are some inherent benefits of having the same person doing the study who did it before. BUT, as I'm sure you could list yourself...there a good bunch of reasons why it is a good thing that NOT THE SAME EMG'er do your next study. Your thoughts? I'm just wondering what the utility of waiting 3 more months would be....I believe that an EMG/NCV should show things of some relevance at this point given the advanced nature of the weakness and fasciculations as I am imagining it in my mind.
I also have to remind you at this point (as I did on the other occasions we've communicated) that not being able to EXAMINE you with a reflex hammer and SHARP PIN (haha!!) in hand puts your attending neurologist in a much better position than I for making suggestions and calling shots when it comes to diagnostic studies and their timing. Make sense?
Still, it's always nice if a fellow colleague would like to take a few minutes to explain their rationale for doing (or for not) certain things.
I know you're on 800u of vitamin D I believe, yes? Do you know what your latest numbers are and if they are still considerably lower than the prime target of 60-80 ng/ml would your neurologist have a problem jacking that dose up to something on the order of at least 3-4000 IU's daily? Of course, I can't make any solid predictions on where all of these other symptoms would go by using increased vitamin D doses....but I'll bet it'd be no worse than the benefit you're getting from increasing the Sinemet....not sure if I would've focused so much on that aspect of things...unless there are definitely PARKINSONISMS that were responding to Sinemet but no longer responding so that a rise in dose would be a reasonable thing to do. Otherwise, if your parkinsonian symptoms have been stable I don't think I would've gone that route.
I don't think you should worry too much about the BOTOX injections for the parotid glands. Of course, the most obvious risk of BOTOX injections is an exacerbation of baseline weakness (which actually may be amplified in patients who already have weakness)...make sense? But no matter. I think the potential benefit of calming that saliva down so you don't choke is much better than the small risk of drug indcued weakness.
How about your pulmonary function parameters? Have you done a Vital Capacity and Negative Inspiratory Force yet? If not, is your neurologist talking about that at all? Or maybe just a general array of both swallowing as well as pulmonary function tests?
I'll stop at this point and let you respond to a bit of this....and in the mean time I'm going to finish packing for flight time tomorrow. Please be patient with any further response to anything you may write as I have additional consults I need to complete before leaving the hotel and then, the flight back to XXXXXXX is not going to really allow me the ability to check my boards until Thursday during the day.....APPRECIATE much your patience as well as the fact that you have returned with additional updates and comments. I hope there is something I can legitimately do for you that you feel can push this train down the tracks a bit more.
Remember, we'd like to know about whether you have UPPER MOTOR NEURON signs per your neurologist's latest examination. If so (and even if not) is there a reason the EMG/NCV needs to wait another 3 months since there is so much going on clinically? And then, there is the vitamin D levels as well as dosing you to a serum concentration level of 60-80 ng./ml. Finally, swallowing tests? PFT's (specifically, NIF and VC).
Be well.....REST a bit yourself.....and tell me how your breathing does feel too....
Regards-
This query required 80 minutes of professional time to research, assimilate, and file a response.
Have read comments and is there a SPECIFIC question to answer?
Detailed Answer:
Good evening (From XXXXXXX Italy)
I am speaking to you from at least 6 hrs. ahead of EASTERN STANDARD TIME in the country known as THE BOOT! LOL....I am here (still) with my wife and daughter having flown out this morning. I'm on the launch pad for tomorrow. My "Bambina" as one of the locals called her (she's 24!) took 2nd place in the XXXXXXX International Invitational Crossfit Games for 2019 and so we're just beaming over here...sorry for that shameless plus for my daughter. I knew that as a nurse, healer, and HIGHLY TRAINED athlete yourself you'd appreciate hearing when a young woman accomplishes something on that order. She is now hungry for that 1st spot on the podium that she'll get a couple of chances at coming up at the Rogue International Throw down in a couple of weeks. she actually qualified 1st out of an invited field of 100 and then, the Crossfit Games themselves in XXXXXXX WI in July which is where some ridiculous cash prizes can be had for top 20 placers.
But let's now talk about what's going on in your world. I've read your comments...I was trying to tease out a question but was unable because obviously, you've got questions, concerns, and thoughts so I'm going to let you lead the orchestra here and direct me as to what you would like to opine on since now there've been some additional moves by your neurologist.
I also reread..TWICE...everything we've been discussing in our threads and if we just go on the basis of last recommendations MY QUESTION to you would be if you followed through with the part of the plan I suggested where you get to sit down in a POW WOW session with your neurologist and just ask a few tough questions? I take it from the first statement in your comments above that you did have such a discussion because you state, "I have spoken with my movement disorder specialist about my extremity weakness and she has set a plan for diagnosis."
I understand that another EMG/NCV is set for August. How about your sharing with me your neurologist's thought on whether or not you are demonstrating any of the CLINICAL CRITERIA for UPPER MOTOR NEURON SIGNS? In other words, your description of what's going on seems to pretty much describe the presence of MUSCLE WEAKNESS both in the upper extremities and also lowers along with fasciculations plus you've shown me atrophy in photos (which has been attributed to CTS and/or ULNAR neuropathy...but it could also be NOT related to those 2 conditions as well).
I am really at a loss to explain why the EMG/NCV is not picking anything that validates weakness in the muscles as well as the fasciculations....that's seems odd to me. Has you neurologist SEEN the fascis? How about HYPERREFLEXIA? So weakness, fasciculations, and HYPERREFLEXIA...does your neurologist believe you possess these items or not as of this moment?
Did your neurologist tell you why they wanted to wait until August to redo the EMG/NCV and how about an MRI of the cervical spinal cord and then, the brain as well just to see what those areas show? If they are not impressed with your picture enough to order the studies did they share with you why not? You obviously do not NEED an EMG/NCV to come to a conclusion of MND but most people will never make a diagnosis of MND with the type of EMG you currently have oon file. I'd also consider asking the neurologist if you could get another electromyographer to do the study.....obviously, there are some inherent benefits of having the same person doing the study who did it before. BUT, as I'm sure you could list yourself...there a good bunch of reasons why it is a good thing that NOT THE SAME EMG'er do your next study. Your thoughts? I'm just wondering what the utility of waiting 3 more months would be....I believe that an EMG/NCV should show things of some relevance at this point given the advanced nature of the weakness and fasciculations as I am imagining it in my mind.
I also have to remind you at this point (as I did on the other occasions we've communicated) that not being able to EXAMINE you with a reflex hammer and SHARP PIN (haha!!) in hand puts your attending neurologist in a much better position than I for making suggestions and calling shots when it comes to diagnostic studies and their timing. Make sense?
Still, it's always nice if a fellow colleague would like to take a few minutes to explain their rationale for doing (or for not) certain things.
I know you're on 800u of vitamin D I believe, yes? Do you know what your latest numbers are and if they are still considerably lower than the prime target of 60-80 ng/ml would your neurologist have a problem jacking that dose up to something on the order of at least 3-4000 IU's daily? Of course, I can't make any solid predictions on where all of these other symptoms would go by using increased vitamin D doses....but I'll bet it'd be no worse than the benefit you're getting from increasing the Sinemet....not sure if I would've focused so much on that aspect of things...unless there are definitely PARKINSONISMS that were responding to Sinemet but no longer responding so that a rise in dose would be a reasonable thing to do. Otherwise, if your parkinsonian symptoms have been stable I don't think I would've gone that route.
I don't think you should worry too much about the BOTOX injections for the parotid glands. Of course, the most obvious risk of BOTOX injections is an exacerbation of baseline weakness (which actually may be amplified in patients who already have weakness)...make sense? But no matter. I think the potential benefit of calming that saliva down so you don't choke is much better than the small risk of drug indcued weakness.
How about your pulmonary function parameters? Have you done a Vital Capacity and Negative Inspiratory Force yet? If not, is your neurologist talking about that at all? Or maybe just a general array of both swallowing as well as pulmonary function tests?
I'll stop at this point and let you respond to a bit of this....and in the mean time I'm going to finish packing for flight time tomorrow. Please be patient with any further response to anything you may write as I have additional consults I need to complete before leaving the hotel and then, the flight back to XXXXXXX is not going to really allow me the ability to check my boards until Thursday during the day.....APPRECIATE much your patience as well as the fact that you have returned with additional updates and comments. I hope there is something I can legitimately do for you that you feel can push this train down the tracks a bit more.
Remember, we'd like to know about whether you have UPPER MOTOR NEURON signs per your neurologist's latest examination. If so (and even if not) is there a reason the EMG/NCV needs to wait another 3 months since there is so much going on clinically? And then, there is the vitamin D levels as well as dosing you to a serum concentration level of 60-80 ng./ml. Finally, swallowing tests? PFT's (specifically, NIF and VC).
Be well.....REST a bit yourself.....and tell me how your breathing does feel too....
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:
Have read comments and is there a SPECIFIC question to answer?
Detailed Answer:
Good evening (From XXXXXXX Italy)
I am speaking to you from at least 6 hrs. ahead of EASTERN STANDARD TIME in the country known as THE BOOT! LOL....I am here (still) with my wife and daughter having flown out this morning. I'm on the launch pad for tomorrow. My "Bambina" as one of the locals called her (she's 24!) took 2nd place in the XXXXXXX International Invitational Crossfit Games for 2019 and so we're just beaming over here...sorry for that shameless plus for my daughter. I knew that as a nurse, healer, and HIGHLY TRAINED athlete yourself you'd appreciate hearing when a young woman accomplishes something on that order. She is now hungry for that 1st spot on the podium that she'll get a couple of chances at coming up at the Rogue International Throw down in a couple of weeks. she actually qualified 1st out of an invited field of 100 and then, the Crossfit Games themselves in XXXXXXX WI in July which is where some ridiculous cash prizes can be had for top 20 placers.
But let's now talk about what's going on in your world. I've read your comments...I was trying to tease out a question but was unable because obviously, you've got questions, concerns, and thoughts so I'm going to let you lead the orchestra here and direct me as to what you would like to opine on since now there've been some additional moves by your neurologist.
I also reread..TWICE...everything we've been discussing in our threads and if we just go on the basis of last recommendations MY QUESTION to you would be if you followed through with the part of the plan I suggested where you get to sit down in a POW WOW session with your neurologist and just ask a few tough questions? I take it from the first statement in your comments above that you did have such a discussion because you state, "I have spoken with my movement disorder specialist about my extremity weakness and she has set a plan for diagnosis."
I understand that another EMG/NCV is set for August. How about your sharing with me your neurologist's thought on whether or not you are demonstrating any of the CLINICAL CRITERIA for UPPER MOTOR NEURON SIGNS? In other words, your description of what's going on seems to pretty much describe the presence of MUSCLE WEAKNESS both in the upper extremities and also lowers along with fasciculations plus you've shown me atrophy in photos (which has been attributed to CTS and/or ULNAR neuropathy...but it could also be NOT related to those 2 conditions as well).
I am really at a loss to explain why the EMG/NCV is not picking anything that validates weakness in the muscles as well as the fasciculations....that's seems odd to me. Has you neurologist SEEN the fascis? How about HYPERREFLEXIA? So weakness, fasciculations, and HYPERREFLEXIA...does your neurologist believe you possess these items or not as of this moment?
Did your neurologist tell you why they wanted to wait until August to redo the EMG/NCV and how about an MRI of the cervical spinal cord and then, the brain as well just to see what those areas show? If they are not impressed with your picture enough to order the studies did they share with you why not? You obviously do not NEED an EMG/NCV to come to a conclusion of MND but most people will never make a diagnosis of MND with the type of EMG you currently have oon file. I'd also consider asking the neurologist if you could get another electromyographer to do the study.....obviously, there are some inherent benefits of having the same person doing the study who did it before. BUT, as I'm sure you could list yourself...there a good bunch of reasons why it is a good thing that NOT THE SAME EMG'er do your next study. Your thoughts? I'm just wondering what the utility of waiting 3 more months would be....I believe that an EMG/NCV should show things of some relevance at this point given the advanced nature of the weakness and fasciculations as I am imagining it in my mind.
I also have to remind you at this point (as I did on the other occasions we've communicated) that not being able to EXAMINE you with a reflex hammer and SHARP PIN (haha!!) in hand puts your attending neurologist in a much better position than I for making suggestions and calling shots when it comes to diagnostic studies and their timing. Make sense?
Still, it's always nice if a fellow colleague would like to take a few minutes to explain their rationale for doing (or for not) certain things.
I know you're on 800u of vitamin D I believe, yes? Do you know what your latest numbers are and if they are still considerably lower than the prime target of 60-80 ng/ml would your neurologist have a problem jacking that dose up to something on the order of at least 3-4000 IU's daily? Of course, I can't make any solid predictions on where all of these other symptoms would go by using increased vitamin D doses....but I'll bet it'd be no worse than the benefit you're getting from increasing the Sinemet....not sure if I would've focused so much on that aspect of things...unless there are definitely PARKINSONISMS that were responding to Sinemet but no longer responding so that a rise in dose would be a reasonable thing to do. Otherwise, if your parkinsonian symptoms have been stable I don't think I would've gone that route.
I don't think you should worry too much about the BOTOX injections for the parotid glands. Of course, the most obvious risk of BOTOX injections is an exacerbation of baseline weakness (which actually may be amplified in patients who already have weakness)...make sense? But no matter. I think the potential benefit of calming that saliva down so you don't choke is much better than the small risk of drug indcued weakness.
How about your pulmonary function parameters? Have you done a Vital Capacity and Negative Inspiratory Force yet? If not, is your neurologist talking about that at all? Or maybe just a general array of both swallowing as well as pulmonary function tests?
I'll stop at this point and let you respond to a bit of this....and in the mean time I'm going to finish packing for flight time tomorrow. Please be patient with any further response to anything you may write as I have additional consults I need to complete before leaving the hotel and then, the flight back to XXXXXXX is not going to really allow me the ability to check my boards until Thursday during the day.....APPRECIATE much your patience as well as the fact that you have returned with additional updates and comments. I hope there is something I can legitimately do for you that you feel can push this train down the tracks a bit more.
Remember, we'd like to know about whether you have UPPER MOTOR NEURON signs per your neurologist's latest examination. If so (and even if not) is there a reason the EMG/NCV needs to wait another 3 months since there is so much going on clinically? And then, there is the vitamin D levels as well as dosing you to a serum concentration level of 60-80 ng./ml. Finally, swallowing tests? PFT's (specifically, NIF and VC).
Be well.....REST a bit yourself.....and tell me how your breathing does feel too....
Regards-
This query required 80 minutes of professional time to research, assimilate, and file a response.
Have read comments and is there a SPECIFIC question to answer?
Detailed Answer:
Good evening (From XXXXXXX Italy)
I am speaking to you from at least 6 hrs. ahead of EASTERN STANDARD TIME in the country known as THE BOOT! LOL....I am here (still) with my wife and daughter having flown out this morning. I'm on the launch pad for tomorrow. My "Bambina" as one of the locals called her (she's 24!) took 2nd place in the XXXXXXX International Invitational Crossfit Games for 2019 and so we're just beaming over here...sorry for that shameless plus for my daughter. I knew that as a nurse, healer, and HIGHLY TRAINED athlete yourself you'd appreciate hearing when a young woman accomplishes something on that order. She is now hungry for that 1st spot on the podium that she'll get a couple of chances at coming up at the Rogue International Throw down in a couple of weeks. she actually qualified 1st out of an invited field of 100 and then, the Crossfit Games themselves in XXXXXXX WI in July which is where some ridiculous cash prizes can be had for top 20 placers.
But let's now talk about what's going on in your world. I've read your comments...I was trying to tease out a question but was unable because obviously, you've got questions, concerns, and thoughts so I'm going to let you lead the orchestra here and direct me as to what you would like to opine on since now there've been some additional moves by your neurologist.
I also reread..TWICE...everything we've been discussing in our threads and if we just go on the basis of last recommendations MY QUESTION to you would be if you followed through with the part of the plan I suggested where you get to sit down in a POW WOW session with your neurologist and just ask a few tough questions? I take it from the first statement in your comments above that you did have such a discussion because you state, "I have spoken with my movement disorder specialist about my extremity weakness and she has set a plan for diagnosis."
I understand that another EMG/NCV is set for August. How about your sharing with me your neurologist's thought on whether or not you are demonstrating any of the CLINICAL CRITERIA for UPPER MOTOR NEURON SIGNS? In other words, your description of what's going on seems to pretty much describe the presence of MUSCLE WEAKNESS both in the upper extremities and also lowers along with fasciculations plus you've shown me atrophy in photos (which has been attributed to CTS and/or ULNAR neuropathy...but it could also be NOT related to those 2 conditions as well).
I am really at a loss to explain why the EMG/NCV is not picking anything that validates weakness in the muscles as well as the fasciculations....that's seems odd to me. Has you neurologist SEEN the fascis? How about HYPERREFLEXIA? So weakness, fasciculations, and HYPERREFLEXIA...does your neurologist believe you possess these items or not as of this moment?
Did your neurologist tell you why they wanted to wait until August to redo the EMG/NCV and how about an MRI of the cervical spinal cord and then, the brain as well just to see what those areas show? If they are not impressed with your picture enough to order the studies did they share with you why not? You obviously do not NEED an EMG/NCV to come to a conclusion of MND but most people will never make a diagnosis of MND with the type of EMG you currently have oon file. I'd also consider asking the neurologist if you could get another electromyographer to do the study.....obviously, there are some inherent benefits of having the same person doing the study who did it before. BUT, as I'm sure you could list yourself...there a good bunch of reasons why it is a good thing that NOT THE SAME EMG'er do your next study. Your thoughts? I'm just wondering what the utility of waiting 3 more months would be....I believe that an EMG/NCV should show things of some relevance at this point given the advanced nature of the weakness and fasciculations as I am imagining it in my mind.
I also have to remind you at this point (as I did on the other occasions we've communicated) that not being able to EXAMINE you with a reflex hammer and SHARP PIN (haha!!) in hand puts your attending neurologist in a much better position than I for making suggestions and calling shots when it comes to diagnostic studies and their timing. Make sense?
Still, it's always nice if a fellow colleague would like to take a few minutes to explain their rationale for doing (or for not) certain things.
I know you're on 800u of vitamin D I believe, yes? Do you know what your latest numbers are and if they are still considerably lower than the prime target of 60-80 ng/ml would your neurologist have a problem jacking that dose up to something on the order of at least 3-4000 IU's daily? Of course, I can't make any solid predictions on where all of these other symptoms would go by using increased vitamin D doses....but I'll bet it'd be no worse than the benefit you're getting from increasing the Sinemet....not sure if I would've focused so much on that aspect of things...unless there are definitely PARKINSONISMS that were responding to Sinemet but no longer responding so that a rise in dose would be a reasonable thing to do. Otherwise, if your parkinsonian symptoms have been stable I don't think I would've gone that route.
I don't think you should worry too much about the BOTOX injections for the parotid glands. Of course, the most obvious risk of BOTOX injections is an exacerbation of baseline weakness (which actually may be amplified in patients who already have weakness)...make sense? But no matter. I think the potential benefit of calming that saliva down so you don't choke is much better than the small risk of drug indcued weakness.
How about your pulmonary function parameters? Have you done a Vital Capacity and Negative Inspiratory Force yet? If not, is your neurologist talking about that at all? Or maybe just a general array of both swallowing as well as pulmonary function tests?
I'll stop at this point and let you respond to a bit of this....and in the mean time I'm going to finish packing for flight time tomorrow. Please be patient with any further response to anything you may write as I have additional consults I need to complete before leaving the hotel and then, the flight back to XXXXXXX is not going to really allow me the ability to check my boards until Thursday during the day.....APPRECIATE much your patience as well as the fact that you have returned with additional updates and comments. I hope there is something I can legitimately do for you that you feel can push this train down the tracks a bit more.
Remember, we'd like to know about whether you have UPPER MOTOR NEURON signs per your neurologist's latest examination. If so (and even if not) is there a reason the EMG/NCV needs to wait another 3 months since there is so much going on clinically? And then, there is the vitamin D levels as well as dosing you to a serum concentration level of 60-80 ng./ml. Finally, swallowing tests? PFT's (specifically, NIF and VC).
Be well.....REST a bit yourself.....and tell me how your breathing does feel too....
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
Your daughter's persistence success and ambition are incredibly impressive. I wish her much more success.
Milan?! I've never been thought I did travel to Scotland in March to do geneaology research. It was an interesting trip.
My doctor does feel there is a strong likely hood that I do have MND signs. She has seen both fasciculations in my arms (both), legs (both), the left side of my torso, and my right upper shoulder. I have demonstrated hyperreflexia but only within the past 9 months.
My understanding is that she want's to wait until August for the repeat EMG/NCS to see if and to what degree there are or are not changes.
I have had a normal MRI of the brain, unfortunately I can't find the report. I did have an MRI of the C-spine and the chest to rule out Brachial Plexus which was not present but the MDS wanted to be certain.
I'm fairly certain that an increase in Vitamin D wouldn't be an issue. I'm trying to share a few notes and reports that you don't have that I believe may answer some of your questions. My Vitamin D level was something like 58 ng/dl but it's in the report I hope I can attach.
I'm not concerned about the Botox, I'm having no trouble with it and the drooling is beginning to subside.
I do have COPD as my PFT's were crappy (no pun intended). I could probably find the report but can't guarantee that. My O2 Sat generally hangs out at about 98 on room air.
I'm not sure if the VA will allow for another EMG'r but I can certainly ask if there is another.
Two things concerning me are:
1. The doctor that did the EMG ordered Ganglioside and ANTI-MAG testing both of which were normal however in my letter she wrote, " I had tests done to see if we could find a "treatable" cause for your problem".
It was a little alarming to see it written like that. I couldn't get any further clarification of EXACTLY what she meant by that.
2. What other testing would be reasonable? Serotonin Level? Heavy Metals? Lumbar puncture? Muscle Biopsy? Or are those unwarranted or premature?
I'm pleased that you actually get to have a life outside of work.
I'm a very patient man and am in no hurry for a response. You've been great and I'll just wait until you respond, whenever that is. Obviously this isn't going away tomorrow. I'm going to try to attach the records. Hope it works.
Safe travels!!!!
Milan?! I've never been thought I did travel to Scotland in March to do geneaology research. It was an interesting trip.
My doctor does feel there is a strong likely hood that I do have MND signs. She has seen both fasciculations in my arms (both), legs (both), the left side of my torso, and my right upper shoulder. I have demonstrated hyperreflexia but only within the past 9 months.
My understanding is that she want's to wait until August for the repeat EMG/NCS to see if and to what degree there are or are not changes.
I have had a normal MRI of the brain, unfortunately I can't find the report. I did have an MRI of the C-spine and the chest to rule out Brachial Plexus which was not present but the MDS wanted to be certain.
I'm fairly certain that an increase in Vitamin D wouldn't be an issue. I'm trying to share a few notes and reports that you don't have that I believe may answer some of your questions. My Vitamin D level was something like 58 ng/dl but it's in the report I hope I can attach.
I'm not concerned about the Botox, I'm having no trouble with it and the drooling is beginning to subside.
I do have COPD as my PFT's were crappy (no pun intended). I could probably find the report but can't guarantee that. My O2 Sat generally hangs out at about 98 on room air.
I'm not sure if the VA will allow for another EMG'r but I can certainly ask if there is another.
Two things concerning me are:
1. The doctor that did the EMG ordered Ganglioside and ANTI-MAG testing both of which were normal however in my letter she wrote, " I had tests done to see if we could find a "treatable" cause for your problem".
It was a little alarming to see it written like that. I couldn't get any further clarification of EXACTLY what she meant by that.
2. What other testing would be reasonable? Serotonin Level? Heavy Metals? Lumbar puncture? Muscle Biopsy? Or are those unwarranted or premature?
I'm pleased that you actually get to have a life outside of work.
I'm a very patient man and am in no hurry for a response. You've been great and I'll just wait until you respond, whenever that is. Obviously this isn't going away tomorrow. I'm going to try to attach the records. Hope it works.
Safe travels!!!!
Your daughter's persistence success and ambition are incredibly impressive. I wish her much more success.
Milan?! I've never been thought I did travel to Scotland in March to do geneaology research. It was an interesting trip.
My doctor does feel there is a strong likely hood that I do have MND signs. She has seen both fasciculations in my arms (both), legs (both), the left side of my torso, and my right upper shoulder. I have demonstrated hyperreflexia but only within the past 9 months.
My understanding is that she want's to wait until August for the repeat EMG/NCS to see if and to what degree there are or are not changes.
I have had a normal MRI of the brain, unfortunately I can't find the report. I did have an MRI of the C-spine and the chest to rule out Brachial Plexus which was not present but the MDS wanted to be certain.
I'm fairly certain that an increase in Vitamin D wouldn't be an issue. I'm trying to share a few notes and reports that you don't have that I believe may answer some of your questions. My Vitamin D level was something like 58 ng/dl but it's in the report I hope I can attach.
I'm not concerned about the Botox, I'm having no trouble with it and the drooling is beginning to subside.
I do have COPD as my PFT's were crappy (no pun intended). I could probably find the report but can't guarantee that. My O2 Sat generally hangs out at about 98 on room air.
I'm not sure if the VA will allow for another EMG'r but I can certainly ask if there is another.
Two things concerning me are:
1. The doctor that did the EMG ordered Ganglioside and ANTI-MAG testing both of which were normal however in my letter she wrote, " I had tests done to see if we could find a "treatable" cause for your problem".
It was a little alarming to see it written like that. I couldn't get any further clarification of EXACTLY what she meant by that.
2. What other testing would be reasonable? Serotonin Level? Heavy Metals? Lumbar puncture? Muscle Biopsy? Or are those unwarranted or premature?
I'm pleased that you actually get to have a life outside of work.
I'm a very patient man and am in no hurry for a response. You've been great and I'll just wait until you respond, whenever that is. Obviously this isn't going away tomorrow. I'm going to try to attach the records. Hope it works.
Safe travels!!!!
Milan?! I've never been thought I did travel to Scotland in March to do geneaology research. It was an interesting trip.
My doctor does feel there is a strong likely hood that I do have MND signs. She has seen both fasciculations in my arms (both), legs (both), the left side of my torso, and my right upper shoulder. I have demonstrated hyperreflexia but only within the past 9 months.
My understanding is that she want's to wait until August for the repeat EMG/NCS to see if and to what degree there are or are not changes.
I have had a normal MRI of the brain, unfortunately I can't find the report. I did have an MRI of the C-spine and the chest to rule out Brachial Plexus which was not present but the MDS wanted to be certain.
I'm fairly certain that an increase in Vitamin D wouldn't be an issue. I'm trying to share a few notes and reports that you don't have that I believe may answer some of your questions. My Vitamin D level was something like 58 ng/dl but it's in the report I hope I can attach.
I'm not concerned about the Botox, I'm having no trouble with it and the drooling is beginning to subside.
I do have COPD as my PFT's were crappy (no pun intended). I could probably find the report but can't guarantee that. My O2 Sat generally hangs out at about 98 on room air.
I'm not sure if the VA will allow for another EMG'r but I can certainly ask if there is another.
Two things concerning me are:
1. The doctor that did the EMG ordered Ganglioside and ANTI-MAG testing both of which were normal however in my letter she wrote, " I had tests done to see if we could find a "treatable" cause for your problem".
It was a little alarming to see it written like that. I couldn't get any further clarification of EXACTLY what she meant by that.
2. What other testing would be reasonable? Serotonin Level? Heavy Metals? Lumbar puncture? Muscle Biopsy? Or are those unwarranted or premature?
I'm pleased that you actually get to have a life outside of work.
I'm a very patient man and am in no hurry for a response. You've been great and I'll just wait until you respond, whenever that is. Obviously this isn't going away tomorrow. I'm going to try to attach the records. Hope it works.
Safe travels!!!!
Brief Answer:
NO worries on the testing that was done...quite standard and reasonable
Detailed Answer:
In your situation where there is obvious and admitted weakness going on with your muscles and I think there is no question at this point that both you, your neurologist, and I are all of the same opinion with respect to the presence of real live weakness going on in your upper and lower extremities.
To your questions:
1. "Treatable Causes" is MEDICAL LINGO meaning.....Ah HA! WE have a disease in front for which there is a bona fide and standard treatment so that the patients get at least BETTER and with a little luck even cured! So, the doctor wrote exactly what we all do when working up a patient for any type of neuromuscular pathology. We rule out all TREATABLE CAUSES. In this case the GANGLIOSIDES and the ANTI-MAG are indicators of an autoimmune process which is not terribly rare and can often be CONFUSED with motor neuron diseases such as ALS. In simplest terms there are autoimmune processes that attack the chemical that forms the basis of some very important cells in the central nervous system called GANGLION CELLS. The chemical that is found in extremely high concentration is called the GANGLIOSIDE.....But there are autoimmune diseases that make the mistake of attacking this chemical substance resulting in aberrant functioning of the ganglion cells which then, can lead eventually to a picture of weakness, motor flaccideity, and other things that LOOK FOR ALL THE WORLD to be motor neuron disease...in other words the OUTCOME of both disease processes look identical....BUT THE UNDERLYING REASONS are different.
On the one hand finding an autoimmune ganglioside disease is not considered a GREAT thing by any means....BUT....there are treatments available....they're doing completely reverse all the effects...but once the diagnosis is made and confirmed, the disease is for the most part TREATABLE....there's that word. ALS on the other hand, is not really highly treatable aside from the 2 drugs that are on the market and even though are poor at best since they only slow things down a little bit.....
TREATABLE DISEASE vs. UNTREATABLE or POORLY TREATABLE disease....hope that's a little clearly.
2. When I work patients up who I suspect have some form of unidentified muscle weakness and I'm not sure whether or not it's an autoimmune condition that's causing it then, I certainly look for HEAVY METALS by first intention. I typically don't like taking chunks of people's brain or muscle out if it's not necessary just to make a slide out of it, make sense? I would do thyroid function tests and I would do Vit. B12, D, and B6 levels. Any or all these nutritional elements could be in deficiency and that should be treated first before getting into any other discussions.
Once again, I greatly appreciate your rating our discussion with a cool 5 STARS if you think I did you right by providing relevant information to make better decisions going to forwarded. A few words of a positive nature would also be greatly appreciated.
This query required 105 minutes of professional time to research, assimilate, and file a response.
NO worries on the testing that was done...quite standard and reasonable
Detailed Answer:
In your situation where there is obvious and admitted weakness going on with your muscles and I think there is no question at this point that both you, your neurologist, and I are all of the same opinion with respect to the presence of real live weakness going on in your upper and lower extremities.
To your questions:
1. "Treatable Causes" is MEDICAL LINGO meaning.....Ah HA! WE have a disease in front for which there is a bona fide and standard treatment so that the patients get at least BETTER and with a little luck even cured! So, the doctor wrote exactly what we all do when working up a patient for any type of neuromuscular pathology. We rule out all TREATABLE CAUSES. In this case the GANGLIOSIDES and the ANTI-MAG are indicators of an autoimmune process which is not terribly rare and can often be CONFUSED with motor neuron diseases such as ALS. In simplest terms there are autoimmune processes that attack the chemical that forms the basis of some very important cells in the central nervous system called GANGLION CELLS. The chemical that is found in extremely high concentration is called the GANGLIOSIDE.....But there are autoimmune diseases that make the mistake of attacking this chemical substance resulting in aberrant functioning of the ganglion cells which then, can lead eventually to a picture of weakness, motor flaccideity, and other things that LOOK FOR ALL THE WORLD to be motor neuron disease...in other words the OUTCOME of both disease processes look identical....BUT THE UNDERLYING REASONS are different.
On the one hand finding an autoimmune ganglioside disease is not considered a GREAT thing by any means....BUT....there are treatments available....they're doing completely reverse all the effects...but once the diagnosis is made and confirmed, the disease is for the most part TREATABLE....there's that word. ALS on the other hand, is not really highly treatable aside from the 2 drugs that are on the market and even though are poor at best since they only slow things down a little bit.....
TREATABLE DISEASE vs. UNTREATABLE or POORLY TREATABLE disease....hope that's a little clearly.
2. When I work patients up who I suspect have some form of unidentified muscle weakness and I'm not sure whether or not it's an autoimmune condition that's causing it then, I certainly look for HEAVY METALS by first intention. I typically don't like taking chunks of people's brain or muscle out if it's not necessary just to make a slide out of it, make sense? I would do thyroid function tests and I would do Vit. B12, D, and B6 levels. Any or all these nutritional elements could be in deficiency and that should be treated first before getting into any other discussions.
Once again, I greatly appreciate your rating our discussion with a cool 5 STARS if you think I did you right by providing relevant information to make better decisions going to forwarded. A few words of a positive nature would also be greatly appreciated.
This query required 105 minutes of professional time to research, assimilate, and file a response.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
NO worries on the testing that was done...quite standard and reasonable
Detailed Answer:
In your situation where there is obvious and admitted weakness going on with your muscles and I think there is no question at this point that both you, your neurologist, and I are all of the same opinion with respect to the presence of real live weakness going on in your upper and lower extremities.
To your questions:
1. "Treatable Causes" is MEDICAL LINGO meaning.....Ah HA! WE have a disease in front for which there is a bona fide and standard treatment so that the patients get at least BETTER and with a little luck even cured! So, the doctor wrote exactly what we all do when working up a patient for any type of neuromuscular pathology. We rule out all TREATABLE CAUSES. In this case the GANGLIOSIDES and the ANTI-MAG are indicators of an autoimmune process which is not terribly rare and can often be CONFUSED with motor neuron diseases such as ALS. In simplest terms there are autoimmune processes that attack the chemical that forms the basis of some very important cells in the central nervous system called GANGLION CELLS. The chemical that is found in extremely high concentration is called the GANGLIOSIDE.....But there are autoimmune diseases that make the mistake of attacking this chemical substance resulting in aberrant functioning of the ganglion cells which then, can lead eventually to a picture of weakness, motor flaccideity, and other things that LOOK FOR ALL THE WORLD to be motor neuron disease...in other words the OUTCOME of both disease processes look identical....BUT THE UNDERLYING REASONS are different.
On the one hand finding an autoimmune ganglioside disease is not considered a GREAT thing by any means....BUT....there are treatments available....they're doing completely reverse all the effects...but once the diagnosis is made and confirmed, the disease is for the most part TREATABLE....there's that word. ALS on the other hand, is not really highly treatable aside from the 2 drugs that are on the market and even though are poor at best since they only slow things down a little bit.....
TREATABLE DISEASE vs. UNTREATABLE or POORLY TREATABLE disease....hope that's a little clearly.
2. When I work patients up who I suspect have some form of unidentified muscle weakness and I'm not sure whether or not it's an autoimmune condition that's causing it then, I certainly look for HEAVY METALS by first intention. I typically don't like taking chunks of people's brain or muscle out if it's not necessary just to make a slide out of it, make sense? I would do thyroid function tests and I would do Vit. B12, D, and B6 levels. Any or all these nutritional elements could be in deficiency and that should be treated first before getting into any other discussions.
Once again, I greatly appreciate your rating our discussion with a cool 5 STARS if you think I did you right by providing relevant information to make better decisions going to forwarded. A few words of a positive nature would also be greatly appreciated.
This query required 105 minutes of professional time to research, assimilate, and file a response.
NO worries on the testing that was done...quite standard and reasonable
Detailed Answer:
In your situation where there is obvious and admitted weakness going on with your muscles and I think there is no question at this point that both you, your neurologist, and I are all of the same opinion with respect to the presence of real live weakness going on in your upper and lower extremities.
To your questions:
1. "Treatable Causes" is MEDICAL LINGO meaning.....Ah HA! WE have a disease in front for which there is a bona fide and standard treatment so that the patients get at least BETTER and with a little luck even cured! So, the doctor wrote exactly what we all do when working up a patient for any type of neuromuscular pathology. We rule out all TREATABLE CAUSES. In this case the GANGLIOSIDES and the ANTI-MAG are indicators of an autoimmune process which is not terribly rare and can often be CONFUSED with motor neuron diseases such as ALS. In simplest terms there are autoimmune processes that attack the chemical that forms the basis of some very important cells in the central nervous system called GANGLION CELLS. The chemical that is found in extremely high concentration is called the GANGLIOSIDE.....But there are autoimmune diseases that make the mistake of attacking this chemical substance resulting in aberrant functioning of the ganglion cells which then, can lead eventually to a picture of weakness, motor flaccideity, and other things that LOOK FOR ALL THE WORLD to be motor neuron disease...in other words the OUTCOME of both disease processes look identical....BUT THE UNDERLYING REASONS are different.
On the one hand finding an autoimmune ganglioside disease is not considered a GREAT thing by any means....BUT....there are treatments available....they're doing completely reverse all the effects...but once the diagnosis is made and confirmed, the disease is for the most part TREATABLE....there's that word. ALS on the other hand, is not really highly treatable aside from the 2 drugs that are on the market and even though are poor at best since they only slow things down a little bit.....
TREATABLE DISEASE vs. UNTREATABLE or POORLY TREATABLE disease....hope that's a little clearly.
2. When I work patients up who I suspect have some form of unidentified muscle weakness and I'm not sure whether or not it's an autoimmune condition that's causing it then, I certainly look for HEAVY METALS by first intention. I typically don't like taking chunks of people's brain or muscle out if it's not necessary just to make a slide out of it, make sense? I would do thyroid function tests and I would do Vit. B12, D, and B6 levels. Any or all these nutritional elements could be in deficiency and that should be treated first before getting into any other discussions.
Once again, I greatly appreciate your rating our discussion with a cool 5 STARS if you think I did you right by providing relevant information to make better decisions going to forwarded. A few words of a positive nature would also be greatly appreciated.
This query required 105 minutes of professional time to research, assimilate, and file a response.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
I also take a daily multivitamin.
I also take a daily multivitamin.
Brief Answer:
Muscle Biopsy and other testing. Multivitamins-see Johns XXXXXXX Report
Detailed Answer:
I'm sorry if I didn't fully address the previous questions you had because I did not say anything your comments on LP and muscle biopsy.
Both of those are invasive procedures. Typically, an LP is done to look for infectious, demyelinating, inflammatory, or autoimmune processes that are either based in the brain, spinal cord, or meninges (coverings of the brain and spinal cord). There are a variety of other reasons to do LP's but those wouldn't have to do necessary with your condition of progressive muscle weakness. I don't see where an LP in this case would be helpful since the idea of some type of rare infectious source is highly unlikely for lack of other signs and symptoms. Multiple sclerosis as the prototypical demyelinating process isn't a great diagnosis at this stage of muscle weakness since you haven't mentioned any types of sensory manifestations to this point and in most folks...that's usually how it's first detected way at the beginning.
I would not consider a muscle biopsy at this point until an EMG/NCV shows something abnormal and I am still not sure I understand your neurologist's rationale at waiting another 5 months. Again, I don't want to presume upon her in any way given she is a MDS and I am not, however, I know that we have revised our thinking and guidelines at our institutions in this area when it comes to the timing of EMG/NCV studies with respect to certain clinical events.
For example, in cases of people suffering from GUILLAIN-BARRE SYNDROME (GBS) who suddenly wake up one morning with lower extremity paralysis....you may have witnessed some of these types of patients. Old school thinking was that electrical studies would not "show" anything significant for at least 3-4 weeks even though the person had either full or near full paralysis.
The theory was that the process of inflammatory demyelination which was an acute event needed "time" to bloom to the point where an EMG would detect anything. That thinking has now been set aside and EMG/NCV's have been clearly shown to demonstrate abnormalities which could certainly at the very least support the idea of an acute demyelinating event as early as 5 days post symptom onset.
I've not examined you personally (and that is an important caveat to keep in front as we have these discussions) but you have sent some photographs of areas of muscle atrophy which admittedly could be due to either CTS or ulnar problems and my impression is that your neurologist is in agreement that you are showing progressive muscle weakness in multiple limbs? Along with fasciculation activity that she has witnessed? And yet there was a normal EMG performed which was normal in the past if memory serves.....So, if it were my decision I would repeat that study at this time for the purpose of establishing some semblance of where we're at electrically with the neuromuscular activity that is going on (i.e. can we demonstrate progression from a normal test to something else?) AND to localize where the problems seem to be (i.e. periphery, spinal cord, somewhere north of that?)....make sense?
Once the EMG has been completed then, to find an underlying cause may very well require a muscle/nerve biopsy...but not until since in my way of thinking...I wouldn't want to deprive you of functional tissue if you're having the progressive symptoms you're having. Make sense?
At the same time it seems that all testing looking for peripheral causes of problem (ganglioside antibodies, myelin associated glycoprotein, thyroid and nutritional disorders) seem to have checked out....time to move up the hierarchy of the central nervous system master plan and start looking at the spinal cord and/or brain for answers. I would've included the heavy metal screen as part of the initial round of metabolic tests back in the beginning. And I am not a XXXXXXX by any means on the muscular dystrophies as a family of disorders but I'm sure if you would've been showing any of the classical showing of fascioscapulohumeral deterioration, or frontal balding with a locking grip that all those things would've been detected long ago and even reported in family members, right?
As far as taking vitamin supplements is concerned it's been pretty well established by the scientific community that MULTIVITAMIN ingestion the way people worldwide have become accustomed to doing is more GOOD BUSINESS than GOOD HEALTH. Here's the report from Johns XXXXXXX that summarizes findings...and there is a TON of other research has shown that the investment of monies for multivitamins into more targeted NUTRITIONAL IMPROVEMENTS such as spending more on foods with healthy ingredients, etc. is of greater health value than taking multivitamins. I always counsel my patients that the taking of a multivitamin for the purpose of replenishing a deficiency would be the equivalent of Eating Dinner the way the Jetsons did on TV back in the 60's! LOL....Remember, they ate those pills that supposedly had all their nutrition packed in them...but of course, nobody believed that cartoon.....but yet we come very close to the same thinking when we use multivitamins. If there is a deficiency such as Vitamin B12, D, C, or folic acid levels then, by all means....either improvement the diet OR take the specific vitamins/minerals which are deficient and let's dispense with this placebo effect that taking a multivitamin is somehow adequately substituting for paying daily attention to eating full and healthy meals in smaller portions 3-4 times daily. Here's the link to the article.
https://www.hopkinsmedicine.org/health/wellness-and-prevention/is-there-really-any-benefit-to-multivitamins
Another thing that crosses my mind (in the absence of having been able to have any type of IN-PERSON interaction with you) is the concept of PARANEOPLASTIC DISORDERS. Has your doctor looked at that category of ailment as something to consider in your case. I noticed you are diagnosed with COPD so would that be as a result of being a smoker or former smoker? Here's one more link I'll show you that does a nice quick bulleted summary of this sort of problem, however, if you're really not showing some other definite signs or symptoms of a neoplastic process anywhere in the body it is probably simply academic...but here it is all the same- this is a Mayo Clinic document:
https://www.mayoclinic.org/diseases-conditions/paraneoplastic-syndromes/symptoms-causes/syc-0000
One final word on the term "treatable cause"....I think it is a bit confusing and can cause folks to be unsettled since the implication seems to be that lab or diagnostic tests are really only geared to detect things that can be TREATED....everything else (which is probably the majority of human infirmity? Vaya con Dios! HA!). And that's not true.
Everything can be treated. Not everything can be fully or optimally reversed when a final diagnosis has been made. In your case, I don't know that the diagnosis of Parkinson's Disease by itself explains what's going on anymore and so now you and your doctors are in a state of having to re-evaluate things. But, when the culprit(s) are finally discovered...no matter the cause.....there's ALWAYS a treatment available....whether it works to REVERSE what has gone before...or arrest the process and hold things steady...case of remission let's say in Cancer.....is another story....but there are always TREATMENTS....and treatments may not necessarily be in the form of conventional Western Medicine or allopathic sorts of pharmaceuticals though that is probably foremost on every patient and doctor's mind but there are so many newer technologies and approaches coming out with NEURONAL STIMULATORS, STEM CELL RESEARCH that is ongoing, TRANSCRANIAL MAGNETIC STIMULATION which is really picking up steam for all sorts of chronic and progressive neurodegenerative disorders that to use the phrase of "looking for treatable causes" any more I believe is antiquated. Make sense?
Hang in there good sir...and let's see what the good doctor on your end would like to do if you were to sit down and have a talk with her about some of these other ideas we've bandied about the past few days.
Once again, if you feel that information of value was gained in our message threads and I've covered all the bases on this round of inquiry, would you consider CLOSING THE QUERY along with a few positive words of feedback and maybe even a 5-star rating if you feel spirit move you? Please keep me updated on things by dropping me a line at www.bit.ly/drdariushsaghafi and let me know which way the train is rolling down the tracks.
Regards.
This query required 165 minutes of professional time to research, assimilate, and file a response.
Muscle Biopsy and other testing. Multivitamins-see Johns XXXXXXX Report
Detailed Answer:
I'm sorry if I didn't fully address the previous questions you had because I did not say anything your comments on LP and muscle biopsy.
Both of those are invasive procedures. Typically, an LP is done to look for infectious, demyelinating, inflammatory, or autoimmune processes that are either based in the brain, spinal cord, or meninges (coverings of the brain and spinal cord). There are a variety of other reasons to do LP's but those wouldn't have to do necessary with your condition of progressive muscle weakness. I don't see where an LP in this case would be helpful since the idea of some type of rare infectious source is highly unlikely for lack of other signs and symptoms. Multiple sclerosis as the prototypical demyelinating process isn't a great diagnosis at this stage of muscle weakness since you haven't mentioned any types of sensory manifestations to this point and in most folks...that's usually how it's first detected way at the beginning.
I would not consider a muscle biopsy at this point until an EMG/NCV shows something abnormal and I am still not sure I understand your neurologist's rationale at waiting another 5 months. Again, I don't want to presume upon her in any way given she is a MDS and I am not, however, I know that we have revised our thinking and guidelines at our institutions in this area when it comes to the timing of EMG/NCV studies with respect to certain clinical events.
For example, in cases of people suffering from GUILLAIN-BARRE SYNDROME (GBS) who suddenly wake up one morning with lower extremity paralysis....you may have witnessed some of these types of patients. Old school thinking was that electrical studies would not "show" anything significant for at least 3-4 weeks even though the person had either full or near full paralysis.
The theory was that the process of inflammatory demyelination which was an acute event needed "time" to bloom to the point where an EMG would detect anything. That thinking has now been set aside and EMG/NCV's have been clearly shown to demonstrate abnormalities which could certainly at the very least support the idea of an acute demyelinating event as early as 5 days post symptom onset.
I've not examined you personally (and that is an important caveat to keep in front as we have these discussions) but you have sent some photographs of areas of muscle atrophy which admittedly could be due to either CTS or ulnar problems and my impression is that your neurologist is in agreement that you are showing progressive muscle weakness in multiple limbs? Along with fasciculation activity that she has witnessed? And yet there was a normal EMG performed which was normal in the past if memory serves.....So, if it were my decision I would repeat that study at this time for the purpose of establishing some semblance of where we're at electrically with the neuromuscular activity that is going on (i.e. can we demonstrate progression from a normal test to something else?) AND to localize where the problems seem to be (i.e. periphery, spinal cord, somewhere north of that?)....make sense?
Once the EMG has been completed then, to find an underlying cause may very well require a muscle/nerve biopsy...but not until since in my way of thinking...I wouldn't want to deprive you of functional tissue if you're having the progressive symptoms you're having. Make sense?
At the same time it seems that all testing looking for peripheral causes of problem (ganglioside antibodies, myelin associated glycoprotein, thyroid and nutritional disorders) seem to have checked out....time to move up the hierarchy of the central nervous system master plan and start looking at the spinal cord and/or brain for answers. I would've included the heavy metal screen as part of the initial round of metabolic tests back in the beginning. And I am not a XXXXXXX by any means on the muscular dystrophies as a family of disorders but I'm sure if you would've been showing any of the classical showing of fascioscapulohumeral deterioration, or frontal balding with a locking grip that all those things would've been detected long ago and even reported in family members, right?
As far as taking vitamin supplements is concerned it's been pretty well established by the scientific community that MULTIVITAMIN ingestion the way people worldwide have become accustomed to doing is more GOOD BUSINESS than GOOD HEALTH. Here's the report from Johns XXXXXXX that summarizes findings...and there is a TON of other research has shown that the investment of monies for multivitamins into more targeted NUTRITIONAL IMPROVEMENTS such as spending more on foods with healthy ingredients, etc. is of greater health value than taking multivitamins. I always counsel my patients that the taking of a multivitamin for the purpose of replenishing a deficiency would be the equivalent of Eating Dinner the way the Jetsons did on TV back in the 60's! LOL....Remember, they ate those pills that supposedly had all their nutrition packed in them...but of course, nobody believed that cartoon.....but yet we come very close to the same thinking when we use multivitamins. If there is a deficiency such as Vitamin B12, D, C, or folic acid levels then, by all means....either improvement the diet OR take the specific vitamins/minerals which are deficient and let's dispense with this placebo effect that taking a multivitamin is somehow adequately substituting for paying daily attention to eating full and healthy meals in smaller portions 3-4 times daily. Here's the link to the article.
https://www.hopkinsmedicine.org/health/wellness-and-prevention/is-there-really-any-benefit-to-multivitamins
Another thing that crosses my mind (in the absence of having been able to have any type of IN-PERSON interaction with you) is the concept of PARANEOPLASTIC DISORDERS. Has your doctor looked at that category of ailment as something to consider in your case. I noticed you are diagnosed with COPD so would that be as a result of being a smoker or former smoker? Here's one more link I'll show you that does a nice quick bulleted summary of this sort of problem, however, if you're really not showing some other definite signs or symptoms of a neoplastic process anywhere in the body it is probably simply academic...but here it is all the same- this is a Mayo Clinic document:
https://www.mayoclinic.org/diseases-conditions/paraneoplastic-syndromes/symptoms-causes/syc-0000
One final word on the term "treatable cause"....I think it is a bit confusing and can cause folks to be unsettled since the implication seems to be that lab or diagnostic tests are really only geared to detect things that can be TREATED....everything else (which is probably the majority of human infirmity? Vaya con Dios! HA!). And that's not true.
Everything can be treated. Not everything can be fully or optimally reversed when a final diagnosis has been made. In your case, I don't know that the diagnosis of Parkinson's Disease by itself explains what's going on anymore and so now you and your doctors are in a state of having to re-evaluate things. But, when the culprit(s) are finally discovered...no matter the cause.....there's ALWAYS a treatment available....whether it works to REVERSE what has gone before...or arrest the process and hold things steady...case of remission let's say in Cancer.....is another story....but there are always TREATMENTS....and treatments may not necessarily be in the form of conventional Western Medicine or allopathic sorts of pharmaceuticals though that is probably foremost on every patient and doctor's mind but there are so many newer technologies and approaches coming out with NEURONAL STIMULATORS, STEM CELL RESEARCH that is ongoing, TRANSCRANIAL MAGNETIC STIMULATION which is really picking up steam for all sorts of chronic and progressive neurodegenerative disorders that to use the phrase of "looking for treatable causes" any more I believe is antiquated. Make sense?
Hang in there good sir...and let's see what the good doctor on your end would like to do if you were to sit down and have a talk with her about some of these other ideas we've bandied about the past few days.
Once again, if you feel that information of value was gained in our message threads and I've covered all the bases on this round of inquiry, would you consider CLOSING THE QUERY along with a few positive words of feedback and maybe even a 5-star rating if you feel spirit move you? Please keep me updated on things by dropping me a line at www.bit.ly/drdariushsaghafi and let me know which way the train is rolling down the tracks.
Regards.
This query required 165 minutes of professional time to research, assimilate, and file a response.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
Muscle Biopsy and other testing. Multivitamins-see Johns XXXXXXX Report
Detailed Answer:
I'm sorry if I didn't fully address the previous questions you had because I did not say anything your comments on LP and muscle biopsy.
Both of those are invasive procedures. Typically, an LP is done to look for infectious, demyelinating, inflammatory, or autoimmune processes that are either based in the brain, spinal cord, or meninges (coverings of the brain and spinal cord). There are a variety of other reasons to do LP's but those wouldn't have to do necessary with your condition of progressive muscle weakness. I don't see where an LP in this case would be helpful since the idea of some type of rare infectious source is highly unlikely for lack of other signs and symptoms. Multiple sclerosis as the prototypical demyelinating process isn't a great diagnosis at this stage of muscle weakness since you haven't mentioned any types of sensory manifestations to this point and in most folks...that's usually how it's first detected way at the beginning.
I would not consider a muscle biopsy at this point until an EMG/NCV shows something abnormal and I am still not sure I understand your neurologist's rationale at waiting another 5 months. Again, I don't want to presume upon her in any way given she is a MDS and I am not, however, I know that we have revised our thinking and guidelines at our institutions in this area when it comes to the timing of EMG/NCV studies with respect to certain clinical events.
For example, in cases of people suffering from GUILLAIN-BARRE SYNDROME (GBS) who suddenly wake up one morning with lower extremity paralysis....you may have witnessed some of these types of patients. Old school thinking was that electrical studies would not "show" anything significant for at least 3-4 weeks even though the person had either full or near full paralysis.
The theory was that the process of inflammatory demyelination which was an acute event needed "time" to bloom to the point where an EMG would detect anything. That thinking has now been set aside and EMG/NCV's have been clearly shown to demonstrate abnormalities which could certainly at the very least support the idea of an acute demyelinating event as early as 5 days post symptom onset.
I've not examined you personally (and that is an important caveat to keep in front as we have these discussions) but you have sent some photographs of areas of muscle atrophy which admittedly could be due to either CTS or ulnar problems and my impression is that your neurologist is in agreement that you are showing progressive muscle weakness in multiple limbs? Along with fasciculation activity that she has witnessed? And yet there was a normal EMG performed which was normal in the past if memory serves.....So, if it were my decision I would repeat that study at this time for the purpose of establishing some semblance of where we're at electrically with the neuromuscular activity that is going on (i.e. can we demonstrate progression from a normal test to something else?) AND to localize where the problems seem to be (i.e. periphery, spinal cord, somewhere north of that?)....make sense?
Once the EMG has been completed then, to find an underlying cause may very well require a muscle/nerve biopsy...but not until since in my way of thinking...I wouldn't want to deprive you of functional tissue if you're having the progressive symptoms you're having. Make sense?
At the same time it seems that all testing looking for peripheral causes of problem (ganglioside antibodies, myelin associated glycoprotein, thyroid and nutritional disorders) seem to have checked out....time to move up the hierarchy of the central nervous system master plan and start looking at the spinal cord and/or brain for answers. I would've included the heavy metal screen as part of the initial round of metabolic tests back in the beginning. And I am not a XXXXXXX by any means on the muscular dystrophies as a family of disorders but I'm sure if you would've been showing any of the classical showing of fascioscapulohumeral deterioration, or frontal balding with a locking grip that all those things would've been detected long ago and even reported in family members, right?
As far as taking vitamin supplements is concerned it's been pretty well established by the scientific community that MULTIVITAMIN ingestion the way people worldwide have become accustomed to doing is more GOOD BUSINESS than GOOD HEALTH. Here's the report from Johns XXXXXXX that summarizes findings...and there is a TON of other research has shown that the investment of monies for multivitamins into more targeted NUTRITIONAL IMPROVEMENTS such as spending more on foods with healthy ingredients, etc. is of greater health value than taking multivitamins. I always counsel my patients that the taking of a multivitamin for the purpose of replenishing a deficiency would be the equivalent of Eating Dinner the way the Jetsons did on TV back in the 60's! LOL....Remember, they ate those pills that supposedly had all their nutrition packed in them...but of course, nobody believed that cartoon.....but yet we come very close to the same thinking when we use multivitamins. If there is a deficiency such as Vitamin B12, D, C, or folic acid levels then, by all means....either improvement the diet OR take the specific vitamins/minerals which are deficient and let's dispense with this placebo effect that taking a multivitamin is somehow adequately substituting for paying daily attention to eating full and healthy meals in smaller portions 3-4 times daily. Here's the link to the article.
https://www.hopkinsmedicine.org/health/wellness-and-prevention/is-there-really-any-benefit-to-multivitamins
Another thing that crosses my mind (in the absence of having been able to have any type of IN-PERSON interaction with you) is the concept of PARANEOPLASTIC DISORDERS. Has your doctor looked at that category of ailment as something to consider in your case. I noticed you are diagnosed with COPD so would that be as a result of being a smoker or former smoker? Here's one more link I'll show you that does a nice quick bulleted summary of this sort of problem, however, if you're really not showing some other definite signs or symptoms of a neoplastic process anywhere in the body it is probably simply academic...but here it is all the same- this is a Mayo Clinic document:
https://www.mayoclinic.org/diseases-conditions/paraneoplastic-syndromes/symptoms-causes/syc-0000
One final word on the term "treatable cause"....I think it is a bit confusing and can cause folks to be unsettled since the implication seems to be that lab or diagnostic tests are really only geared to detect things that can be TREATED....everything else (which is probably the majority of human infirmity? Vaya con Dios! HA!). And that's not true.
Everything can be treated. Not everything can be fully or optimally reversed when a final diagnosis has been made. In your case, I don't know that the diagnosis of Parkinson's Disease by itself explains what's going on anymore and so now you and your doctors are in a state of having to re-evaluate things. But, when the culprit(s) are finally discovered...no matter the cause.....there's ALWAYS a treatment available....whether it works to REVERSE what has gone before...or arrest the process and hold things steady...case of remission let's say in Cancer.....is another story....but there are always TREATMENTS....and treatments may not necessarily be in the form of conventional Western Medicine or allopathic sorts of pharmaceuticals though that is probably foremost on every patient and doctor's mind but there are so many newer technologies and approaches coming out with NEURONAL STIMULATORS, STEM CELL RESEARCH that is ongoing, TRANSCRANIAL MAGNETIC STIMULATION which is really picking up steam for all sorts of chronic and progressive neurodegenerative disorders that to use the phrase of "looking for treatable causes" any more I believe is antiquated. Make sense?
Hang in there good sir...and let's see what the good doctor on your end would like to do if you were to sit down and have a talk with her about some of these other ideas we've bandied about the past few days.
Once again, if you feel that information of value was gained in our message threads and I've covered all the bases on this round of inquiry, would you consider CLOSING THE QUERY along with a few positive words of feedback and maybe even a 5-star rating if you feel spirit move you? Please keep me updated on things by dropping me a line at www.bit.ly/drdariushsaghafi and let me know which way the train is rolling down the tracks.
Regards.
This query required 165 minutes of professional time to research, assimilate, and file a response.
Muscle Biopsy and other testing. Multivitamins-see Johns XXXXXXX Report
Detailed Answer:
I'm sorry if I didn't fully address the previous questions you had because I did not say anything your comments on LP and muscle biopsy.
Both of those are invasive procedures. Typically, an LP is done to look for infectious, demyelinating, inflammatory, or autoimmune processes that are either based in the brain, spinal cord, or meninges (coverings of the brain and spinal cord). There are a variety of other reasons to do LP's but those wouldn't have to do necessary with your condition of progressive muscle weakness. I don't see where an LP in this case would be helpful since the idea of some type of rare infectious source is highly unlikely for lack of other signs and symptoms. Multiple sclerosis as the prototypical demyelinating process isn't a great diagnosis at this stage of muscle weakness since you haven't mentioned any types of sensory manifestations to this point and in most folks...that's usually how it's first detected way at the beginning.
I would not consider a muscle biopsy at this point until an EMG/NCV shows something abnormal and I am still not sure I understand your neurologist's rationale at waiting another 5 months. Again, I don't want to presume upon her in any way given she is a MDS and I am not, however, I know that we have revised our thinking and guidelines at our institutions in this area when it comes to the timing of EMG/NCV studies with respect to certain clinical events.
For example, in cases of people suffering from GUILLAIN-BARRE SYNDROME (GBS) who suddenly wake up one morning with lower extremity paralysis....you may have witnessed some of these types of patients. Old school thinking was that electrical studies would not "show" anything significant for at least 3-4 weeks even though the person had either full or near full paralysis.
The theory was that the process of inflammatory demyelination which was an acute event needed "time" to bloom to the point where an EMG would detect anything. That thinking has now been set aside and EMG/NCV's have been clearly shown to demonstrate abnormalities which could certainly at the very least support the idea of an acute demyelinating event as early as 5 days post symptom onset.
I've not examined you personally (and that is an important caveat to keep in front as we have these discussions) but you have sent some photographs of areas of muscle atrophy which admittedly could be due to either CTS or ulnar problems and my impression is that your neurologist is in agreement that you are showing progressive muscle weakness in multiple limbs? Along with fasciculation activity that she has witnessed? And yet there was a normal EMG performed which was normal in the past if memory serves.....So, if it were my decision I would repeat that study at this time for the purpose of establishing some semblance of where we're at electrically with the neuromuscular activity that is going on (i.e. can we demonstrate progression from a normal test to something else?) AND to localize where the problems seem to be (i.e. periphery, spinal cord, somewhere north of that?)....make sense?
Once the EMG has been completed then, to find an underlying cause may very well require a muscle/nerve biopsy...but not until since in my way of thinking...I wouldn't want to deprive you of functional tissue if you're having the progressive symptoms you're having. Make sense?
At the same time it seems that all testing looking for peripheral causes of problem (ganglioside antibodies, myelin associated glycoprotein, thyroid and nutritional disorders) seem to have checked out....time to move up the hierarchy of the central nervous system master plan and start looking at the spinal cord and/or brain for answers. I would've included the heavy metal screen as part of the initial round of metabolic tests back in the beginning. And I am not a XXXXXXX by any means on the muscular dystrophies as a family of disorders but I'm sure if you would've been showing any of the classical showing of fascioscapulohumeral deterioration, or frontal balding with a locking grip that all those things would've been detected long ago and even reported in family members, right?
As far as taking vitamin supplements is concerned it's been pretty well established by the scientific community that MULTIVITAMIN ingestion the way people worldwide have become accustomed to doing is more GOOD BUSINESS than GOOD HEALTH. Here's the report from Johns XXXXXXX that summarizes findings...and there is a TON of other research has shown that the investment of monies for multivitamins into more targeted NUTRITIONAL IMPROVEMENTS such as spending more on foods with healthy ingredients, etc. is of greater health value than taking multivitamins. I always counsel my patients that the taking of a multivitamin for the purpose of replenishing a deficiency would be the equivalent of Eating Dinner the way the Jetsons did on TV back in the 60's! LOL....Remember, they ate those pills that supposedly had all their nutrition packed in them...but of course, nobody believed that cartoon.....but yet we come very close to the same thinking when we use multivitamins. If there is a deficiency such as Vitamin B12, D, C, or folic acid levels then, by all means....either improvement the diet OR take the specific vitamins/minerals which are deficient and let's dispense with this placebo effect that taking a multivitamin is somehow adequately substituting for paying daily attention to eating full and healthy meals in smaller portions 3-4 times daily. Here's the link to the article.
https://www.hopkinsmedicine.org/health/wellness-and-prevention/is-there-really-any-benefit-to-multivitamins
Another thing that crosses my mind (in the absence of having been able to have any type of IN-PERSON interaction with you) is the concept of PARANEOPLASTIC DISORDERS. Has your doctor looked at that category of ailment as something to consider in your case. I noticed you are diagnosed with COPD so would that be as a result of being a smoker or former smoker? Here's one more link I'll show you that does a nice quick bulleted summary of this sort of problem, however, if you're really not showing some other definite signs or symptoms of a neoplastic process anywhere in the body it is probably simply academic...but here it is all the same- this is a Mayo Clinic document:
https://www.mayoclinic.org/diseases-conditions/paraneoplastic-syndromes/symptoms-causes/syc-0000
One final word on the term "treatable cause"....I think it is a bit confusing and can cause folks to be unsettled since the implication seems to be that lab or diagnostic tests are really only geared to detect things that can be TREATED....everything else (which is probably the majority of human infirmity? Vaya con Dios! HA!). And that's not true.
Everything can be treated. Not everything can be fully or optimally reversed when a final diagnosis has been made. In your case, I don't know that the diagnosis of Parkinson's Disease by itself explains what's going on anymore and so now you and your doctors are in a state of having to re-evaluate things. But, when the culprit(s) are finally discovered...no matter the cause.....there's ALWAYS a treatment available....whether it works to REVERSE what has gone before...or arrest the process and hold things steady...case of remission let's say in Cancer.....is another story....but there are always TREATMENTS....and treatments may not necessarily be in the form of conventional Western Medicine or allopathic sorts of pharmaceuticals though that is probably foremost on every patient and doctor's mind but there are so many newer technologies and approaches coming out with NEURONAL STIMULATORS, STEM CELL RESEARCH that is ongoing, TRANSCRANIAL MAGNETIC STIMULATION which is really picking up steam for all sorts of chronic and progressive neurodegenerative disorders that to use the phrase of "looking for treatable causes" any more I believe is antiquated. Make sense?
Hang in there good sir...and let's see what the good doctor on your end would like to do if you were to sit down and have a talk with her about some of these other ideas we've bandied about the past few days.
Once again, if you feel that information of value was gained in our message threads and I've covered all the bases on this round of inquiry, would you consider CLOSING THE QUERY along with a few positive words of feedback and maybe even a 5-star rating if you feel spirit move you? Please keep me updated on things by dropping me a line at www.bit.ly/drdariushsaghafi and let me know which way the train is rolling down the tracks.
Regards.
This query required 165 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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