Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

 
 
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Old 06-30-2012, 09:43 AM #1
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
15 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
15 yr Member
Default update: finally improving

Looking back, I think I've had MG for three years, though I only realized something was wrong for about 2 1/2. It took me 15 months to get a diagnosis because I'm seronegative. The only drug I take is Imuran. I've been taking it for over a year, but I was on too small a dose for most of that time: first 100 mg, then 150. I've been on 200 for about three months.

I still have clusters of bad days, when I'm generally weak and also get episodes (usually in the evening) of intense weakness. These "spells" last about an hour and a half. But those clusters of weak days seem to be getting shorter and further apart, and in between I've been quite strong. I've been taking the kids to the beach, something I wouldn't have even attempted a year ago. On a good day I'm not normal--I still tire too easily, and feel the fatigue in my arms and neck--but I'm able to do things I couldn't a year, or even six months, ago.

Abby
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