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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Senior Member
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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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"Thanks for this!" says: | Geode (07-03-2012), pingpongman (06-30-2012) |
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#2 | ||
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Member
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I am so glad that you are beginning to notice some improvement! It has been a long road. I sure hope it just gets better and better and better for you!!
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"Thanks for this!" says: | Stellatum (07-01-2012) |
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#3 | |||
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Member
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I'm really glad the Imuran is working for you. We are sure it was helping my strength but I just lost too much weight. Still waiting on Cellcept.
![]() Mike |
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"Thanks for this!" says: | Stellatum (07-01-2012) |
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#4 | ||
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Junior Member
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Cellcept might take a while. I took Imuran for years and it was replaced by Cellcept after side effects on Imuran. It took Cellcept 1 1/2 years to work fully and I feel better than I ever have in my 40 plus years of heavy duty MG. Be patient and good luck
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"Thanks for this!" says: | pingpongman (07-03-2012) |
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