Originally Posted by Geode

To review - I fluctuate between 3 states: almost normal, painful muscle spasms, and weakness. Doc thinks it's not MG, doesn't know what it IS. Gave me a trial of Mestinon just in case, but he didn't discuss with me how to use it. Rx written for 60mg every 4 hours.

First time I took it, I was feeling almost normal, took 60mg. 30min later, was weak, brain felt drugged, and pupils got tiny. OK that was wrong!

Second time, I waited until a severe weakness episode, and took 30mg. 30min later, eyes popped open and I could get out of bed and do housework. BINGO! I thought I'd found the magic bullet.

Next 4 times, I took 30mg when my eyes were droopy, but I didn't feel terrible overall. Went straight from ptosis to spastic eyelid closure, had some GI side effects.

Next time, 30mg during a bad weakness attack. Eyes opened a little for about an hour, but I was still down for the count. Repeat in 4 hours with no benefit.

Next day 60mg with bad weakness attack. No benefit, GI side effects.
Today 30mg with weakness; no effect.

Any recommendations?
tatia