For some reason, doctors seem to be terrified to prescribe mestinon. They will give you Oxycontin, Demerol, valium, ambien, antidepressants, and most anything else with little reason. But mestinon is over the line. Does anybody understand that? It really has been my experience. I was passed around to numerous doctors before somebody would try it.

Because a person who doesn't need Mestinon can overdose and die with a very small amount of it.

Remember, the symptoms of too little acetylcholine (a "Myasthenic Crisis") are almost exactly the same as the symptoms of too MUCH acetylcholine (a "Cholinergic Crisis").

It's a tricky little disease that all of us have, and since it is so rare (only 600 new cases diagnosed in the US each year) it is one that most physicians are not familiar with. Even neurologists can be stumped by it. Most physicians are taught to look for the "horse" (common conditions) rather than the "zebra" (rare conditions), precisely because most people DON'T have rare conditions.

Keep insisting that your doctor keep looking - if he/she isn't willing to do that, then find one who will. It's your health that's at stake here.

Wow. I didn't know that. So if you can tolerate a lot of it, does that support the MG diagnosis?

I learned from Alice that in medicine, there is something called a "therapeutic trial". A diagnosis is suspected but not entirely clear, you try giving a medication that would work for it and a positive response supports the diagnosis. But that Mestinon is not MG specific.

I also heard that there are some people in France who are prescribed Mestinon for bowel problems and it can also help low blood pressure. But then I start to wonder.......if this is so, and their bodies are getting the benefits from the side effects of the drug - how can they then get away without having the adverse effects from Mestinon when even myasthenic users themselves can be at risk???

Anacrusis