Hi, Tony. I never had any stomach/GI issues, other than it helped peristalsis.
Mestinon kicks in about 30 minutes after you take it. Two hours after it kicks in, it wears off. So you're only getting about two good hours of use!
At some point, your doctor and you should have a conversation about the dose amount and the spacing of the dose.
More isn't necessarily better with Mestinon. You can overdose with too much and have a cholinergic crisis (from too much acetylcholine).
Too little acetylcholine can cause a myasthenic crisis.
It's a tricky little drug (and disease).
Have your doctors considered LEMS (Lambert-Eaton Myasthenic Syndrome) or a CMS (Congenital Myasthenic Syndrome)?
If you have low IgA, the antibody tests can present with a false negative. Has anyone tested your IgA levels?
What else can we help you out with?
There's a lot to know about MG. If that's what is going on, you should read up! I hope the doctors can figure out if it's MG for sure, because it sucks not knowing.
Annie