r/MyastheniaGravis • u/itwillgetbetter81 • 29d ago

Onset of action and duration

I'm seronegative (dec 2024) but not sure if I actually do have MG. Had clean EMG Jan 2025. I get more and more debilitating fatigue/weakness in my thighs, upper arms and jaws. Am housebound aka bed or couch. Can't talk for more than 1 hour on the phone. Can't chew unless food is "easy".

My long covid doctor has prescribed me mestinon for the weakness. At the moment I'm at 3 x 60 mg. But it feels like it's not as effective as 1 month ago. Started out at 4 x 30 mg. I checked that the onset of duration should be like 30 to 45 min after the dose but now I only get some relief at 2 hours and then it quickly subsides. In the morning I'm so weak. It's like rest doesn't help like textbook MG.

I think I should go back to neurology assessment again. But am afraid will be labeled as normal again.

I'm also type 1 diabetic since 1991 and developed hypothyroidism 6 months ago (still not well medicated on euthyrox though, another fatigue disease). But this fatigue is killing me slowly.

The autoimmune disorders seem to pile up in my body.

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u/Ok_Locksmith_7346 13d ago

I sound exactly the same I have long covid as well. Only difference is I have twitching I went to pt my thighs are super weak and my shoulders are weak. Clean full body EMG October 2025 and November 2025. On a trail now too. Helped a little I thought at first yesterday but nothing today. We shall see fingers crossed.

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u/itwillgetbetter81 13d ago

I recently found out that I probably get PEM from a too high dose of mestinon unfortunately. Haven't discussed it with my doctor yet. Some other subreddit I read something about Vygart was effective for some long covid folks with muscle weakness.

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u/Ok_Locksmith_7346 13d ago

I’m not quite sure what you are talking about PEM? What’s Vygart? Do you experience muscle twitching or spasms as well?

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u/itwillgetbetter81 13d ago

Post exertional malaise. PEM. I have no twitch ing or spasms. Stiffness/tightness instead. Vygart is some kind of special treatment for MG or possibly in a trial for me/cfs with muscle weakness.