So, as you may have read in another thread, my sister NOW has a tentative diagnosis of MG -- positive striational antibodies and a mediastinum mass on her CT which they think is most likely a thymoma. Neuro put her on a trial of Mestinon -- 30 mg three times a day.

I am conservative and WELL remember the stomach cramps from the early days. I told my sister we were gonna start off easy. With all of the other stuff she has going on, she certainly doesn't need to deal with a cholinergic crisis, right? I mean, WHAT IF this isn't MG? What if it walks like a duck, swims like a duck, quacks like a duck, but is, in fact, a COW?!?!

So, baby sis takes 1/4 a tab (15 mg) at around 5:30 PM. At about 6:15 she calls ALL EXCITED!! She can WHISTLE again!! She proceeds to almost deafen me by whistling into the phone for several minutes. Well, ok!! Then she says she "feels" her feet. What? And, her feet and legs don't feel heavy. Well, ok!! She is giddy. WOW!!!!! I cannot remember how quickly MY first dose worked. I think mine did work within the first couple of days.......I SHOULD have paid better attention!! I think I was still in shock at being diagnosed.

Anyway, she calls me back at 9 PM, all deflated. No more whistling, legs are heavy again, blah blah blah. "Oh, sweetie, THIS is how Mestinon works!" So, this is real. My sister has MG. *sigh* I do NOT want her to have this. We have desperately WANTED answers -- now we seem to have them.

BTW, she didn't get stomach cramps, but she DID pass gas.......once.

We now wait to see if Mestinon improves her most troubling and persistent symptom, swallowing.