So, within an hour of taking my first Mestinon dose, my breathing felt ever so slightly easier, but I saw no difference with my ptosis at all. I also felt extremely weak - I could barely get up the stairs. Not a nice feeling at all. Is this a side effect I have to get used to, or does even more weakness mean I don't have MG? I'm very small and drugs do normally effect me a LOT...

Any advice would be much appreciated!

The increased weakness 1 hour after pill is of some concern. Perhaps the dose is too much...or too much too soon. My neuro started me out slower..and ramped up with time. I never had any side effects and noticed immediate improvement in my ptosis and duration of muscle duration.

Talk to your doc, but some folks here (myself included) take less. but more often. I take 30 mg roughly every 3 hours....making some time adjustments depending upon how I'm feeling. But I don't recommend making adjustments without your doc on board...and most especially without some experience of how you and Mestinon get along over a week or more period of time.

But....if you have any significant increased weakness after Mestinon....don't fool with that. Stop taking it and call neuro for advice.

Let us know how it goes.

I had a real bad reaction to my first dose of mestinon. My first neuro had me start at 60mg and it turned out I had to work up to that. I had bad diarrhea and twitching everywhere which I thought was a seizure. I went to the ER and they gave me Lorazepam and I slept until the side effects went away. Then I worked up to the correct dosage. I'm not sure why that didn't just give me atropine except that I went to the standalone ER which I've since learned isn't equipped to handle me and I won't go back to again (even though its supposed to be the same as the hospital ERs).

Anyway, its possible you don't have MG, or maybe you are just on the wrong dose. You're neuro would be the best person to make that call.

Each of us as individuals have slightly different symptoms, though quite often similar in nature. But, each of us are unique in that our bodies are slightly different, and thus suseptible to different drugs and tollerances. I am 6'4" and weigh 225 lbs, and my neurologist thought that I might have already had my MG for 10 years before being diagnosed. Thus, he started me off, this week, on 60mg 4 times a day. I've found out, for my body, and specific needs that it isn't enough, and thus the effects run out prior to taking the next pill.

I definately would be talking with your Neurologist as soon as possible, as being too weak sound, to me with my limited experience, as if it's too much too soon.

I have very few side effects to mestinon, except about once a week, some minor leg cramps at night. only 1 or 2 , so it doesn't bother me that much.I take 60 x 3 a day, so guess i am lucky that I have no major side effects. I am pretty sure I have MG though, because antibodys were so high.
I hope the side effects do not increase, I don't need that
FREDH

Myasthenia is not one disease. Some types of myasthenia may do worse with mestinon. I would stop taking it and discuss with your neurologist.

Alice, could you explain about the different types and what type would be helped and what type would be made worse by the drug?