Whirlwind, Maybe you can explain things to your doctor in this way. Anything the body needs, like vitamin B12 or acetylcholine, is all about supply and demand. If you don't have enough acetylcholine, at rest or while doing something, your muscles will be weak and need Mestinon (or rest). If you have a fair amount of it (ACh) and don't do anything, you should be fine. If you have a fair amount and do something, you can use up what you have pretty quickly. Mestinon dosing can absolutely be activity dependent.

However, for some people like me, a constant dose helps to keep my MG stable. It can often tank quickly and I would rather stay ahead of that nasty curve so that I don't get much worse. That's why my neuro has me taking 90 mg. every three hours, round the clock. I can take a bit more when out. I can reduce my dose if I feel I need to. Having a conversation about this variability and having a neuro who trusts you really helps.

There are two issues here: Dose amount and dose frequency. Giving your body what it needs on a regular schedule makes sense to me. Maybe what you need is 15 mg., then 30 mg. later in the day or when you do activities or more after you do activities.

No one patient fits some neat little Mestinon algorithm! We are all different in how our MG is at the moment, what side effects we have, if we are overall stable, on immunosuppressants too, etc. Your doctor is acting as if MG works in a vacuum and isn't variable. Silly doctor.

Use your instincts. Then talk it over with your neuro and make him understand it. Take care,

Annie