Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
http://www.fda.gov/Drugs/EmergencyPreparedness/BioterrorismandDrugPreparedness/ucm130342.htm
Please don't take my Mestinon away!
Although Mestinon treats only the symptoms (how wonderful to have the symptoms treated!), it is an important part of our treatment repertoire, especially until we go into good chemical or spontaneous remission. Some members with documented MG cannot take it, but most of us benefit greatly at some time in the course of our treatment.
So far this is best article I have found regarding the use of Mestinon in healthy subjects. The dose is low, side effects are given, treatment times are extremely limited and the statement that it is unethical to use the drug in safety studies with healthy subjects all suggest that this is NOT a drug to be given to people who do not have one of the myasthenias, which may explain some of the reluctance on the part of our neurologists to initiate a trial, but then we are not healthy subjects and have muscle weakness and this is a therapeutic trial, not a safety study.
The other point is that if we are tolerating much larger doses with great improvement and little side effects, what is the mechanism if it is not myasthenia? What are these other conditions that supposedly respond to Mestinon that keep a trial from being a good indication of diagnosis?
I have had side effects along with improvement and I think most of us at some dose have had them as well, but I'll take mine any day, to have the improvement in symptoms. One of the persistent irritations is the difficulty getting this pill all the way down. Of all the medications I take, this is the most difficult. It is one way to know if I have taken my medicines, as in if something seems stuck in my esophagus, I have taken them. Breaking the pill in two helps. Any other suggestions and experiences are appreciated and if anyone can tell me of any other condition that responds to Mestinon that could be confused with myasthenia gravis, I would be interested in knowing what it is. b.
Please don't take my Mestinon away!
Although Mestinon treats only the symptoms (how wonderful to have the symptoms treated!), it is an important part of our treatment repertoire, especially until we go into good chemical or spontaneous remission. Some members with documented MG cannot take it, but most of us benefit greatly at some time in the course of our treatment.
So far this is best article I have found regarding the use of Mestinon in healthy subjects. The dose is low, side effects are given, treatment times are extremely limited and the statement that it is unethical to use the drug in safety studies with healthy subjects all suggest that this is NOT a drug to be given to people who do not have one of the myasthenias, which may explain some of the reluctance on the part of our neurologists to initiate a trial, but then we are not healthy subjects and have muscle weakness and this is a therapeutic trial, not a safety study.
The other point is that if we are tolerating much larger doses with great improvement and little side effects, what is the mechanism if it is not myasthenia? What are these other conditions that supposedly respond to Mestinon that keep a trial from being a good indication of diagnosis?
I have had side effects along with improvement and I think most of us at some dose have had them as well, but I'll take mine any day, to have the improvement in symptoms. One of the persistent irritations is the difficulty getting this pill all the way down. Of all the medications I take, this is the most difficult. It is one way to know if I have taken my medicines, as in if something seems stuck in my esophagus, I have taken them. Breaking the pill in two helps. Any other suggestions and experiences are appreciated and if anyone can tell me of any other condition that responds to Mestinon that could be confused with myasthenia gravis, I would be interested in knowing what it is. b.
I liken me and mestinon to a diabetic with insulin. I never go anywhere without it. Although I have pills left over at the end of the month, I go ahead and get my prescription filled. Yes, I'm a mestinon hoarder. I never want to be in a circumstance where I don't have a good supply.
Thanks for the post and article Beth.
-sherry
I forgot to add in my previous post that I had come across this article when first prescribed mestinon.
Off subject, I posted my relationship with mestinon and how important it is to me:)
-sherry
This is the FDA notice where they gave permission to the military to pretreat soldiers who were going into a situation where they might be exposed to curare poisoning. None of these soldiers had myasthenia. The reason they gave for approval was that in animal testing, the animals treated with Mestinon before they were exposed to curare had better survival rates than those who were not.
They considered it unethical to do a safety trial with Mestinon on healthy soldiers and certainly were not going to give any of them curare on purpose to see whether it helped. I don't know what criteria they used to dictate dosage, but it would be an awfully small one for someone with MG and I gathered from the article that even at that low dosage it wasn't well tolerated, and from other places concern that it contributed to Gulf War Syndrome, which at best is poorly understood.
Neurologists have hesitated to give seronegative people with possible MG a trial of Mestinon for diagnostic purposes when it seems the easiest and most practical way to make a diagnosis (although it would not rule it out). Neurologists have also taken MG medications away (when they were working) just because blood tests have been negative and the neurologist didn't believe the person had MG. From my standpoint, both practices result in prolonged disability and danger for the person with MG.
If you don't have MG or expect to be poisoned with nerve gas don't take this drug because it has side effects that may be serious. If you tolerate the drug and it helps unexpected muscle weakness, in my book, and until otherwise informed, you have MG and the rest of the work up is to rule out complicating illnesses. Of course, I am not a neurologist, but I am curious as to why this is not general practice. b.
Bearing in mind I am not a doctor, the research I've done shows that people with LEMS and ALS also respond to Mestinon favorably. With LEMS, this does not seem as surprising since it is a form of myasthenia. I haven't found an explanation for why it helps persons with ALS.
Surprises me, but apparently ALS is confused with MG sometimes if a patient presents very early to doctor. Pretty quickly, the symptoms become very different, so should be easy to distinguish. I don't have a link, but there is a paper about this written for neuros available on the web called "Approach to the patient with suspected myasthenia gravis or als".
LEMS is usually presented as starting at the bottom and working its way up in contrast to MG starting at the top and working its way down, but as I've dug deeper into articles and books for neuros, I've found this distinction is unreliable as is the idea that LEMS doesn't cause bulbar symptoms.
Those who have been on this site for a while are doubtless familiar with all I've written, but I typed it out for newbies like me who don' t have the same opportunities to do research.
Rhonda
I just had this question posed to me privately from a member. I have looked at it a little more since I received her message, although I have not heard back from her.
Bweeds, this is a great subject for discussion. "So doctor, we know Mestinon works for me, but I am negative for MG. What do I have then if not MG?"
Are the other possible myasthenic syndromes easily testable(detectable) and if so, are these tests being done when negative for MG and mestinon is effective? If not, which one is it? Is it a myasthenic syndrome(like LEMS) of some kind, and then which one do I have? A neuromuscular junction disorder(NMJ)? I see Escobar on this list below here, and I know SweetLuvgirl here takes mestinon for her escobar.
MG and NMJ disorders:
http://neuromuscular.wustl.edu/synmg.html
Mestinon has shown to be effective for orthostatic hypotension, chronic axonal polyneuropathy, and Postural Tachycardia Syndrome.
http://en.wikipedia.org/wiki/Postural_Tachycardia_Syndrome
Another suggestion on my own could be Hypophosphatemia?
http://en.wikipedia.org/wiki/Hypophosphatemia
When my doctor didn't know, I Dx myself and he agreed right away after I mentioned it. So much to give me mestinon before I was even tested. Perhaps my symptoms were classic enough to justify this?
The toughest part about all of this mentioned is just not knowing what you have without a doubt. How many different ways can a cold virus present itself? "In total over 200 different viral types are associated with colds"
http://ndmat.hosp.ncku.edu.tw:8080/%E5%85%92%E7%A7%91/Feb-27.pdf
Hope that helps in some way,
TJ
Mestinon - is - evidently used to combat other illnesses.
So, indeed. If you have symptoms, just like MG?
Yet: you do not test-out, for MG?
Yet mestinon - does work - on your symptoms?
Well then, doctor.
What - do - I have?
I am greatful to have the classic symptoms and posative responce to mestinon even though I am a seroneg.
This is how I have been able to get the other treatments, like IVIG.
I certainly would have had many more hosptialazation had I not been rx this the last 6 months.
Sherry- I too hoard my mestinon :)
I am so very afraid to run out and have a major epispode of weakness.
I will not go with out it agian-
Jeannie
LEMS has a specific test and often small cell lung cancer and is another autoimmune myasthenia. It responds, but can be differentiated. Escobar Syndrome presents differently. ALS has other symptomatology although there might be confusion early--no reason not to start treatment in these cases.
Orthostatic hypotension does not look like MG nor does low potassium, hypothyridism might be confused initially, but does not respond to Mestinon, asthma does not respond to Mestinon nor does MG respond to drugs given for asthma, etc. The psychological disorders hinted at if not expressed openly have their own symptomatology and Mestinon would be expected to make those people sick, not better, and any temporary improvement (strange placebo effect) would be temporary. I was given the differential of MG or nothing. I would think it very easy to diifferentiate the two.
MG is so weird that it is hard to confuse it with other neurological or autoimmune problems. Response to Mestinon is just the clincher. Is there anything else that looks like autoimmune myasthenia and responds to Mestinon? If not, why is a trial not part of the work up? Shall we all ask our neurologists? Nicely. b.
Dont worry about the statement that it is not ethical to test on healthy people. This is a standard FDA statement to include in this type of trial which is on teatment to protect the military in potential war situations and is not normally extended into therapeutic treatments.
I suspect the reluctance of many neurologists to prescribe pyridostigmine without high tec test data results from the "sue everybody" culture it that exists in some parts. A liability action is easilly defended if there is test result data but much less so if diagnosis is made without it.
,I use a pill cutter which I bought from the local chemist from the local chemist. It is especially good for larger pills like Panadol.
Lorraine
I was offered Mestinon after my first appointment with the neuro, and I would not be able to work at this point if I did not have it. I feel deep sympathy for anyone who would benefit from it who is being denied access.