Brief Answer:
This does not sound like PD but rather a form of MND

Detailed Answer:
Good afternoon and I'm very sorry you are having such intrusive symptoms of what has been apparently diagnosed as PARKINSON'S disease (PD).

I am very surprised that an electrical study is not yielding some types of abnormality in the face of such progressive symptoms as weakness, atrophy, and fasciculations. It is said that electrical studies do not become immediately positive until several weeks after an insult has occurred. But in fact, studies in the literature do not support such a notion.

First of all, I would like to ask whether or not the diagnosis of PD is one that was made by a movement disorder specialist, general/other neurologist, or non-neurologist? Are you being seen at a Academic Center for testing and treatment (i.e. University Hospital affiliated with a Medical School, etc.) or is the physician a community doctor not affiliated to any academic institution? Finally, how well did your initial symptoms of what was diagnosed as PD respond to the initial wave of treatment with Sinemet?

Typically (>95% of cases), classic forms of PD respond very robustly to Sinemet. We usually refer to the prescription of the medication as the "test of fire" since over 95% of cases will have a noticeable and measurable response according to UPDRS criteria and even without the screening tool, most patients and family members will agree inside of 2 weeks or less that things are greatly improved. In my practice if someone isn't responsive to an initial dose of Sinemet and assuming they are able to tolerate the medication without side effects I will start rethinking my diagnosis after the 1st wave...and if after an increase nothing, then, for sure I would be questioning the diagnosis.

Furthermore, if the symptoms you are now talking about were the initial symptoms of presentation for which PD was the presumptive diagnosis then, my concern at this evolution revolves essentially around some type of spinal cord motor neuron disease or MND.

The constellation of symptoms for MOTOR NEURON DISEASES fall into a few common categories that we see either at presentation include:

weakness of grip, difficult holding on to objects, generalized fatigue (usually progresses to excessive daytime somnolence not due to other causes), muscle soreness leading to OCCASIONAL cramping, muscle twitches (usually AFTER muscle weakness has occurred), increased clumsiness, and mild slurring of speech.

More advanced symptoms involve things that you describe such as actually weight loss, muscle atrophy, fasciculations especially noted in areas where muscle mass has been lost or appears to be thinning, low volume voice, choking, drooling, frequent or even chronic muscle cramping (Charley Horses that are continuously present and painful), and excessive/continous yawning, severe excessive daytime somnolence not due to any other cause, respiratory difficulties such as shortness of breath after minimal activity, and there are others.

When talking about the different types of MND

My suggestion to you is that you obtain a second opinion on the diagnosis of PD and that you seek out a specialist in movement disorders or neuromuscular problems. Either of those 2 subspecialists (or even a GOOD general neurologist) should recognize this as a NONPARKINSONIAN type of problem and get the proper examination and other studies done to help support the diagnosis. Be aware of the fact, that MOTOR NEURON DISEASES are by no means DIAGNOSED using tests or electrical studies though the public (and maybe even some in the medical profession) may think that it's the study results that really count. Nothing could be further from the truth.

If we are discussing something like Amyotrophic Lateral Sclerosis (ALS) then, to be crystal clear....the diagnosis of this entity can be done purely on clinical grounds according to the El Escorial Work group Criteria. Electrical studies are obtained almost universally in patients who present with the types of symptoms you have but a patient can still be diagnosed WITHOUT such testing. Again, in your case I am very curious as to why the EMG/NCS results are so benign...unless they were done at the very outset of symptoms months or years ago and not done since. With current signs and symptoms of weakness, fascics, and atrophy I would absolutely expect abnormal changes involving lower motor signs.

There are different types of motor neuron disease but ALS is the most common of them all. Others that get much less publicity but can be just as bothersome though not as treacherous are progressive muscular atrophy (PBA) and primary lateral sclerosis (PLS). Even ALS has a couple of subdivisons but at this time I highly recommend you get a solid second opinion from a center that specializes in neuromuscular diseases or motor neuron diseases.

Here is a reference link to a very nice summary of what I've said above that you may read and share:

http://www.alsa.org/als-care/resources/publications-videos/factsheets/criteria-for-diagnosis.html

Around where you live you also have the University of New Mexico's Health Science Center's Neuromuscular program:

https://hsc.unm.edu/health/patient-care/neurosciences-stroke-care/neuromuscular-program.html

I've taken the XXXXXXX to provide you with the pertinent contact information so that you can move as quickly as possible to get someone to look at your case:

MDA/ALS CENTER AT THE UNIVERSITY OF NEW MEXICO HEALTH SCIENCES CENTER
(505) 272-3342
(505) 272-6692 FAX
E-mail: YYYY@YYYY XXXXXXX E. Chapin, M.D., Director
University of New Mexico
915 Camino de Salud, NE XXXXXXX NM 87131


If I've provided useful or helpful information to your questions and you have no further inquiries or comments at this time then, 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 on how things are going in the next few days or weeks if you'd drop me a line at www.bit.ly/drdariushsaghafi

You can always reach me at the above address for this and other questions. I wish you the best with everything and hope this dialogue has helped you give you a little more direction as to what you may wish to do as well as things you can discuss with your doctors when you next see them.

This query required 52 minutes of professional time to research, assimilate, and respond in complete form.

---

Brief Answer:
This does not sound like PD but rather a form of MND

Detailed Answer:
Good afternoon and I'm very sorry you are having such intrusive symptoms of what has been apparently diagnosed as PARKINSON'S disease (PD).

I am very surprised that an electrical study is not yielding some types of abnormality in the face of such progressive symptoms as weakness, atrophy, and fasciculations. It is said that electrical studies do not become immediately positive until several weeks after an insult has occurred. But in fact, studies in the literature do not support such a notion.

First of all, I would like to ask whether or not the diagnosis of PD is one that was made by a movement disorder specialist, general/other neurologist, or non-neurologist? Are you being seen at a Academic Center for testing and treatment (i.e. University Hospital affiliated with a Medical School, etc.) or is the physician a community doctor not affiliated to any academic institution? Finally, how well did your initial symptoms of what was diagnosed as PD respond to the initial wave of treatment with Sinemet?

Typically (>95% of cases), classic forms of PD respond very robustly to Sinemet. We usually refer to the prescription of the medication as the "test of fire" since over 95% of cases will have a noticeable and measurable response according to UPDRS criteria and even without the screening tool, most patients and family members will agree inside of 2 weeks or less that things are greatly improved. In my practice if someone isn't responsive to an initial dose of Sinemet and assuming they are able to tolerate the medication without side effects I will start rethinking my diagnosis after the 1st wave...and if after an increase nothing, then, for sure I would be questioning the diagnosis.

Furthermore, if the symptoms you are now talking about were the initial symptoms of presentation for which PD was the presumptive diagnosis then, my concern at this evolution revolves essentially around some type of spinal cord motor neuron disease or MND.

The constellation of symptoms for MOTOR NEURON DISEASES fall into a few common categories that we see either at presentation include:

weakness of grip, difficult holding on to objects, generalized fatigue (usually progresses to excessive daytime somnolence not due to other causes), muscle soreness leading to OCCASIONAL cramping, muscle twitches (usually AFTER muscle weakness has occurred), increased clumsiness, and mild slurring of speech.

More advanced symptoms involve things that you describe such as actually weight loss, muscle atrophy, fasciculations especially noted in areas where muscle mass has been lost or appears to be thinning, low volume voice, choking, drooling, frequent or even chronic muscle cramping (Charley Horses that are continuously present and painful), and excessive/continous yawning, severe excessive daytime somnolence not due to any other cause, respiratory difficulties such as shortness of breath after minimal activity, and there are others.

When talking about the different types of MND

My suggestion to you is that you obtain a second opinion on the diagnosis of PD and that you seek out a specialist in movement disorders or neuromuscular problems. Either of those 2 subspecialists (or even a GOOD general neurologist) should recognize this as a NONPARKINSONIAN type of problem and get the proper examination and other studies done to help support the diagnosis. Be aware of the fact, that MOTOR NEURON DISEASES are by no means DIAGNOSED using tests or electrical studies though the public (and maybe even some in the medical profession) may think that it's the study results that really count. Nothing could be further from the truth.

If we are discussing something like Amyotrophic Lateral Sclerosis (ALS) then, to be crystal clear....the diagnosis of this entity can be done purely on clinical grounds according to the El Escorial Work group Criteria. Electrical studies are obtained almost universally in patients who present with the types of symptoms you have but a patient can still be diagnosed WITHOUT such testing. Again, in your case I am very curious as to why the EMG/NCS results are so benign...unless they were done at the very outset of symptoms months or years ago and not done since. With current signs and symptoms of weakness, fascics, and atrophy I would absolutely expect abnormal changes involving lower motor signs.

There are different types of motor neuron disease but ALS is the most common of them all. Others that get much less publicity but can be just as bothersome though not as treacherous are progressive muscular atrophy (PBA) and primary lateral sclerosis (PLS). Even ALS has a couple of subdivisons but at this time I highly recommend you get a solid second opinion from a center that specializes in neuromuscular diseases or motor neuron diseases.

Here is a reference link to a very nice summary of what I've said above that you may read and share:

http://www.alsa.org/als-care/resources/publications-videos/factsheets/criteria-for-diagnosis.html

Around where you live you also have the University of New Mexico's Health Science Center's Neuromuscular program:

https://hsc.unm.edu/health/patient-care/neurosciences-stroke-care/neuromuscular-program.html

I've taken the XXXXXXX to provide you with the pertinent contact information so that you can move as quickly as possible to get someone to look at your case:

MDA/ALS CENTER AT THE UNIVERSITY OF NEW MEXICO HEALTH SCIENCES CENTER
(505) 272-3342
(505) 272-6692 FAX
E-mail: YYYY@YYYY XXXXXXX E. Chapin, M.D., Director
University of New Mexico
915 Camino de Salud, NE XXXXXXX NM 87131


If I've provided useful or helpful information to your questions and you have no further inquiries or comments at this time then, 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 on how things are going in the next few days or weeks if you'd drop me a line at www.bit.ly/drdariushsaghafi

You can always reach me at the above address for this and other questions. I wish you the best with everything and hope this dialogue has helped you give you a little more direction as to what you may wish to do as well as things you can discuss with your doctors when you next see them.

This query required 52 minutes of professional time to research, assimilate, and respond in complete form.

---

Brief Answer:
Parkinson's and ALS can be comorbid in the same patient

Detailed Answer:
Thank you for the clarifications. I am happy to hear that are being followed by movement disorder specialists who themselves are affiliated with Academic institutions. I too am at the XXXXXXX Stokes XXXXXXX VA Medical Center and have come to XXXXXXX in the past to do some training with UNM's program on SCAN/ECHO which you may known actually started at the XXXXXXX VAMC and is the central training ground for other facilities.

And so after reviewing the information you've provided it certainly seems to me the diagnosis of PD in 2011 must've been accurate though you didn't describe the initial symptoms that first took you to the doctor.

Are you certain that all the relatives you mention actually had PD and none of them ALS? It is more plausible and likely for the progeny of a family with ALS to contract that disease rather than PD though there certainly are many more genetic connections we know of these days of PD running in families. But then, IF you were to have ALS, and it were absolutely the 1st or index case in your family with so many people diagnosed with PD...that would be remarkable in my opinion.

Notwithstanding, let's move the next part of your discussion. You mention you have RBD which is an interesting piece of information since that particular phenomenon is MOST associated to cases of synucleinopathies such as (and most frequently) PD and all of the PD like syndromes such as MSA, LBD, dementias, narcolepsies, but NOT so much ALS.

You must some form of rest tremor since you told me that you had a POSITIVE DATSCAN. DATSCAN's typically are used to distinguish tremors seen in PD from Essential tremors. You state that you robustly responded to selegeline and sinemet when started in 2017 but that now the effects of the medications are noticeably wearing off. Does this imply that between 2011-2017 your choice was not to take any medication for the PD?

I also reviewed the EMG results and find them to be comprehensively performed with good rationale in terms of conclusions as to why motor neuron disease cannot yet be supported by the findings.

Do you know, however, that motor neuron disease (such as ALS) does not require electrical studies be performed. EMG/NCV can NEVER rule in a diagnosis of ALS...nor can they ever RULE OUT the diagnosis. I have this conversation with patients all the time regarding these tests and despite the fact that an electrical study is almost a guaranteed part of every workup for a patient with ALS....it is not as frequently HELPFUL as either doctors or patients would like them to be...which just underscores the important of the neurological examination and as importantly the evolution of the history of the illness which is of course, what the patient tells us.

I agree with you that the decline in motor function appears to be much more rapid and aggressive in your case...on the other hand since you were only 48 years when you were diagnosed with PD it is usually the case that PD in such young individuals tends to be of a more aggressive course, and so would the fall off in motor capacity with atrophy, etc. really be so out of the ordinary? Is it possible that something such as DBS (deep brain stimulation) for which the VA in XXXXXXX outsources its patients either to XXXXXXX Clinic or University Hospitals of XXXXXXX affiliated with Case Western Reserve University- could actually improve your overall picture based on these symptoms reflecting a more aggressive course of YOUNG ONSET PD?

I would be very interested in what your doctor thinks since this is in his wheelhouse, right? Have you been tried on additional dopaminergics and/or other forms of rehabilitative therapy such as EXERCISE REHABILITATION....and I'm not referring merely to PHYSICAL THERAPY.....we know that's useless for the symptoms you've got....In Ohio, there is program that was started a number of years ago for PD patients called DELAY THE DISEASE. I don't know if that program's grown to become a nationally recognized program or not. Unfortunately, the VA does not participate or employ instructors but I can tell you that my patients (who have PD) and who go to this program regularly rave about it. It is a form of EXERCISE REHABILITATION specifically designed and geared toward PD patients. It involves the use and working of LARGE MUSCLE GROUPS. I understand you're having some decided difficulties with some of those muscle groups. I'm wondering if a program like this might not benefit you.

If you go on the internet you'll see that the DTD program has materials online for purchase so that if you simply wanted to get these materials and try them out for yourself (in case your region doesn't have the program) you may find some utility....at least for the PARKINSONIAN SYMPTOMS.

And there is an interesting detail which I wonder if your doctor is aware and that is that REQUIP (Ropinirole) traditionally used to treat PD has been published in a PRE-CLINICAL TRIAL to be potentially helpful in ALS. This was revealed in Aug. 2018 in NATURE and is not an FDA approved treatment for ALS at this point by any means. However, because ALS and PD share so many common biochemical anomalies and enzyme deficiencies as well as receptor deficiencies and neurotransmitter dry spots in the brain and spinal...the thought with the ropinirole was that perhaps some of what it does in PD could help kickstart at least some systems in ALS.

Therefore, if your neurologist is not interested in calling your condition any form of MOTOR NEURON DISEASE at this time (which sounds as if there are some clinical criteria there...but maybe not all??) that if he wanted to use ROPINIROLE to try and improve the activity of your Sinemet that on the off chance you could have the start of ALS or even some other motor neuron disease.....that the medication could possibly give you double duty...without really being in violation of FDA usage guidelines nor against any VA pharmacy guidelines since the medication would be prescribed for your PD....see how that works????

But again, I think it'd be best to discuss your concerns with your neurologist since ALS is EASILY (well, that's a haphazard word to use in your case! :0 ) diagnosable by him on CLINICAL GROUNDS. Or does he prefer to follow the line of reasoning I proposed above which would put your symptoms more on a line with just an aggressive form of PD that is not responding as well any more to the medication....but who knows...if you tweak the regimen with an additional dopamigeric or 2...or if you think about DBS?....or if you think about a levodopa pump implant in the gut? Or if you try the old standby that is always one of my GOTO when standards stop working as well, AMANTADINE, could we avoid trying to invoke a 2nd disease process.

The answer to your question about PD coexisting with ALS in the same person is YES....YES, the 2 can live in the same person which is not surprising since the genetic variations and changes that would need to occur from one disease process to the other are not that great. The reason you don't hear about this combination of problems in patients is because it a lot more common than you think....yet nobody wants to write a case series up...but we all know they're there...and we treat them as if they have 2 different entities though recent genetic and biochemical studies suggest that the 2 processes may be on more of a CONTINUUM than actually living next door to one another...In other words, one process (usually PD) morphs into the next one. Make sense?

I don't have the statistics to share with you on the likelihood of the 2 coming together but I can tell you that probably nobody has that number but every neurologist...well, every movement disorder specialist would tell you...that it's a lot more common than you think. I'm not a movement disorder specialist by any means....BUT....working in a VA setting allows one to BECOME a movement disorder specialist if one avails themselves (HA!) since there is just tons of PD, MSA, PSP, and unfortunately, ALS in our midst.....we know that the chances of getting these difficult processes to deal with is on an increased risk scale in veteran...especially those who served in Vietnam (Agent Orange exposure) or in any setting where strong herbicides or pesticides were used in the camps, boats, ships, etc.

So though it is possible for you to be harboring perhaps, some of the beginning symptoms of a motor neuron disease, I would caution you that jumping to that conclusion given the specifics of your case at this point may be premature. Nonetheless, I do think you have ample grounds for concern and should have a XXXXXXX discussion with your neurologist to see where his head is at with respect to these things. What does he really think you have at this point and what sort of game plan can he envision for you to look into to see if anything of what I mentioned or what's available may work for you?

Once again, I'd be very grateful if you consider jotting down a few thoughts on what you thought of this consultation and whether it helped you gain a bit more perspective on the questions you asked. I'm hopeful that I've given you a few ideas to discuss with your doctors and look forward to your dropping me a line at www.bit.ly/drdariushsaghafi to keep me apprised of your situation.

You can always reach me at the above URL for this and other questions. I wish you the best with everything and would not be SURPRISED in the least if implementation of some of what I mentioned above would make you feel a bit better and stronger.

Don't forget to look up that reference in Nature, Aug. 2018 I believe I saw the article. Your doctor may be interested in it if he's not already in the know.

Be Cheery Good Nurse.....We ALL made it from yesterday to Today....Carry On!

This query required 112 minutes of professional time to research, assimilate, and respond in complete form.

---

Brief Answer:
Parkinson's and ALS can be comorbid in the same patient

Detailed Answer:
Thank you for the clarifications. I am happy to hear that are being followed by movement disorder specialists who themselves are affiliated with Academic institutions. I too am at the XXXXXXX Stokes XXXXXXX VA Medical Center and have come to XXXXXXX in the past to do some training with UNM's program on SCAN/ECHO which you may known actually started at the XXXXXXX VAMC and is the central training ground for other facilities.

And so after reviewing the information you've provided it certainly seems to me the diagnosis of PD in 2011 must've been accurate though you didn't describe the initial symptoms that first took you to the doctor.

Are you certain that all the relatives you mention actually had PD and none of them ALS? It is more plausible and likely for the progeny of a family with ALS to contract that disease rather than PD though there certainly are many more genetic connections we know of these days of PD running in families. But then, IF you were to have ALS, and it were absolutely the 1st or index case in your family with so many people diagnosed with PD...that would be remarkable in my opinion.

Notwithstanding, let's move the next part of your discussion. You mention you have RBD which is an interesting piece of information since that particular phenomenon is MOST associated to cases of synucleinopathies such as (and most frequently) PD and all of the PD like syndromes such as MSA, LBD, dementias, narcolepsies, but NOT so much ALS.

You must some form of rest tremor since you told me that you had a POSITIVE DATSCAN. DATSCAN's typically are used to distinguish tremors seen in PD from Essential tremors. You state that you robustly responded to selegeline and sinemet when started in 2017 but that now the effects of the medications are noticeably wearing off. Does this imply that between 2011-2017 your choice was not to take any medication for the PD?

I also reviewed the EMG results and find them to be comprehensively performed with good rationale in terms of conclusions as to why motor neuron disease cannot yet be supported by the findings.

Do you know, however, that motor neuron disease (such as ALS) does not require electrical studies be performed. EMG/NCV can NEVER rule in a diagnosis of ALS...nor can they ever RULE OUT the diagnosis. I have this conversation with patients all the time regarding these tests and despite the fact that an electrical study is almost a guaranteed part of every workup for a patient with ALS....it is not as frequently HELPFUL as either doctors or patients would like them to be...which just underscores the important of the neurological examination and as importantly the evolution of the history of the illness which is of course, what the patient tells us.

I agree with you that the decline in motor function appears to be much more rapid and aggressive in your case...on the other hand since you were only 48 years when you were diagnosed with PD it is usually the case that PD in such young individuals tends to be of a more aggressive course, and so would the fall off in motor capacity with atrophy, etc. really be so out of the ordinary? Is it possible that something such as DBS (deep brain stimulation) for which the VA in XXXXXXX outsources its patients either to XXXXXXX Clinic or University Hospitals of XXXXXXX affiliated with Case Western Reserve University- could actually improve your overall picture based on these symptoms reflecting a more aggressive course of YOUNG ONSET PD?

I would be very interested in what your doctor thinks since this is in his wheelhouse, right? Have you been tried on additional dopaminergics and/or other forms of rehabilitative therapy such as EXERCISE REHABILITATION....and I'm not referring merely to PHYSICAL THERAPY.....we know that's useless for the symptoms you've got....In Ohio, there is program that was started a number of years ago for PD patients called DELAY THE DISEASE. I don't know if that program's grown to become a nationally recognized program or not. Unfortunately, the VA does not participate or employ instructors but I can tell you that my patients (who have PD) and who go to this program regularly rave about it. It is a form of EXERCISE REHABILITATION specifically designed and geared toward PD patients. It involves the use and working of LARGE MUSCLE GROUPS. I understand you're having some decided difficulties with some of those muscle groups. I'm wondering if a program like this might not benefit you.

If you go on the internet you'll see that the DTD program has materials online for purchase so that if you simply wanted to get these materials and try them out for yourself (in case your region doesn't have the program) you may find some utility....at least for the PARKINSONIAN SYMPTOMS.

And there is an interesting detail which I wonder if your doctor is aware and that is that REQUIP (Ropinirole) traditionally used to treat PD has been published in a PRE-CLINICAL TRIAL to be potentially helpful in ALS. This was revealed in Aug. 2018 in NATURE and is not an FDA approved treatment for ALS at this point by any means. However, because ALS and PD share so many common biochemical anomalies and enzyme deficiencies as well as receptor deficiencies and neurotransmitter dry spots in the brain and spinal...the thought with the ropinirole was that perhaps some of what it does in PD could help kickstart at least some systems in ALS.

Therefore, if your neurologist is not interested in calling your condition any form of MOTOR NEURON DISEASE at this time (which sounds as if there are some clinical criteria there...but maybe not all??) that if he wanted to use ROPINIROLE to try and improve the activity of your Sinemet that on the off chance you could have the start of ALS or even some other motor neuron disease.....that the medication could possibly give you double duty...without really being in violation of FDA usage guidelines nor against any VA pharmacy guidelines since the medication would be prescribed for your PD....see how that works????

But again, I think it'd be best to discuss your concerns with your neurologist since ALS is EASILY (well, that's a haphazard word to use in your case! :0 ) diagnosable by him on CLINICAL GROUNDS. Or does he prefer to follow the line of reasoning I proposed above which would put your symptoms more on a line with just an aggressive form of PD that is not responding as well any more to the medication....but who knows...if you tweak the regimen with an additional dopamigeric or 2...or if you think about DBS?....or if you think about a levodopa pump implant in the gut? Or if you try the old standby that is always one of my GOTO when standards stop working as well, AMANTADINE, could we avoid trying to invoke a 2nd disease process.

The answer to your question about PD coexisting with ALS in the same person is YES....YES, the 2 can live in the same person which is not surprising since the genetic variations and changes that would need to occur from one disease process to the other are not that great. The reason you don't hear about this combination of problems in patients is because it a lot more common than you think....yet nobody wants to write a case series up...but we all know they're there...and we treat them as if they have 2 different entities though recent genetic and biochemical studies suggest that the 2 processes may be on more of a CONTINUUM than actually living next door to one another...In other words, one process (usually PD) morphs into the next one. Make sense?

I don't have the statistics to share with you on the likelihood of the 2 coming together but I can tell you that probably nobody has that number but every neurologist...well, every movement disorder specialist would tell you...that it's a lot more common than you think. I'm not a movement disorder specialist by any means....BUT....working in a VA setting allows one to BECOME a movement disorder specialist if one avails themselves (HA!) since there is just tons of PD, MSA, PSP, and unfortunately, ALS in our midst.....we know that the chances of getting these difficult processes to deal with is on an increased risk scale in veteran...especially those who served in Vietnam (Agent Orange exposure) or in any setting where strong herbicides or pesticides were used in the camps, boats, ships, etc.

So though it is possible for you to be harboring perhaps, some of the beginning symptoms of a motor neuron disease, I would caution you that jumping to that conclusion given the specifics of your case at this point may be premature. Nonetheless, I do think you have ample grounds for concern and should have a XXXXXXX discussion with your neurologist to see where his head is at with respect to these things. What does he really think you have at this point and what sort of game plan can he envision for you to look into to see if anything of what I mentioned or what's available may work for you?

Once again, I'd be very grateful if you consider jotting down a few thoughts on what you thought of this consultation and whether it helped you gain a bit more perspective on the questions you asked. I'm hopeful that I've given you a few ideas to discuss with your doctors and look forward to your dropping me a line at www.bit.ly/drdariushsaghafi to keep me apprised of your situation.

You can always reach me at the above URL for this and other questions. I wish you the best with everything and would not be SURPRISED in the least if implementation of some of what I mentioned above would make you feel a bit better and stronger.

Don't forget to look up that reference in Nature, Aug. 2018 I believe I saw the article. Your doctor may be interested in it if he's not already in the know.

Be Cheery Good Nurse.....We ALL made it from yesterday to Today....Carry On!

This query required 112 minutes of professional time to research, assimilate, and respond in complete form.

---