Hi Kathie,

I'm new to this sort of thing (replying to e-mails to strangers). I too have MG. I was diagnosed in March 1997. I had a thymectomy in April 1997 and went into complete remission for almost 12 years. My symptoms at that time were a drooping left eye lid, left arm and left leg weakness. The leg was so weak that I had to lead with my right leg to go up stairs. My arm could be pulled down from a horizonal position just with a finger tip. I essentially had no strength on the left side of my body. My boss at the time questioned me and thought maybe it was all in my head. After 6 months of test, it was confirmed I had MG.

Anyway, regrettably I came out of remission in the spring of 2009. The 4 neurologist I saw in Tucson, AZ didn't figure it out. It wasn't until I was retired from active duty (28 years USAF) and returned to little ole' Alamogordo, NM and saw the only neurologist in town that it was determined after he conducted a simple tensilon test that my MG had returned. Although the mestinon helps, the symptoms I now have aren't going away. I struggle with steps and walking because my left leg weakness returned. I also suffer from a great deal of fatigue. I just do what I can each day and try not to push myself too much. When I over do it, I'm generally exhausted for a few days and confined to the sofa. It's very frustrating as I was a gym rat and avid hiker for 30 years. I now limit my activities to light workouts once or twice a week and golf 9 holes (using a handicap flag so I can park the cart next to the green). Fortunately, my left eye lid doesn't droop unless I'm really tired and my left arm (for now) seems to have the same strength as my right.

I would recommend you try the time release mestinon which does help some patients. Another thing that seems to make the fatigue I have worse is stress. Fortunately, because of all my medical problems, between my VA disability and military retirement, I don't have a great deal of stress so that helps.