Hi Sue and welcome. I think that MG is such a difficult disease to pin down. And just when you think you know how far to push yourself it changes again. I have had a lot of trouble taking mestinon personally. It gives me migraines, so I take a really strong preventative in order to take it. I think I am alone on the migraine thing tho. But I do have to take a lot more of it now than when I first started taking it. Well again Welcome and I try to write down all my questions that I come up with for doctors on a notepad in my purse. That way I remember them all. Good Luck and keep coming back.

Thanks for warm welcome! Sorry about your migraines. I had about four as an after effect from adult mono. I had never had a headache in my life before then. Never even taken an aspirin. HORRIBLE, debilitating, outright nasty migraines can be. Only the four - - and that was many years ago. I am very lucky - - and am grateful.

I am about to 'celebrate' my one week aniversary on Mestinon. Yeah! Right now I am convinced it is a wonder drug for me - - and really hope it stays that way! I have started a MG diary of sorts. My neuro has encouraged me to 'experiment' within limits with the timing and dosage of Mestinon - so I'm keeping track of that.

I wished I had found this forum during the 'searching for what's wrong with me' phase. Honestly, there were times when I wondered if I was just being a lazy, whiny baby when I would have those 'lower than a snake's belly' kind of days. Especially when it turned out the next day was a winner! (hehehehehe)

Anyway, thanks to all for sharing and encouraging words. Validation is a beautiful thing!! Someday, my experience will be of help to someone else as your's are now for me.

Sue

Hi Sue, and welcome. Sorry I'm so late in joining, but I recently was able to return to work (very very close to full time) and I'm trying to conserve energy for that.

You may find as you learn more about MG and look back, that you have had it longer than you thought. Mine started years ago, but MG can go into remission on it's own early on and that's what mine did. I can recall times though that it was flaring and I didn't pay much attention because it wasn't debilitating then. The old school of thought was that it generally progresses for about 20 years, then hits it's peak and levels off. There are periods of spontaneous remission in there, and the symptoms may or may not get progressively worse. That's where the difference comes in. Some people may never progress to a debilitating level and I sure hope you're in that group!

You seem to have a strong awareness of your body, and a wonderful outlook and both these traits will help you alot with MG.

Glad you have joined us! Look forward to learning more about you!