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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Hi,
Thought I'd update you on my status, for the one or two who have been following this treatment. For a quick review: I had high dose cyclophosphamide (immune system reboot) Nov 5-9, 2010. I have been feeling very well since about Christmas Eve. Before then, I was pretty week and still had a lot of MG symptoms. Since then, I've become totally functional, and practically symptom free. I saw my neurologist this morning and she was impressed. The last time she saw me before the reboot she did a disability screening scale on me and I had a score of 19, with mostly bulbar, but generalized weakness present. Today she repeated the screening, and I scored a 3. I still have residual eyelid and lip weakness as well as a touch of neck weakness, but everything else is NORMAL! ![]() She was so impressed, in fact, she says that she will now feel comfortable offering this treatment to others, especially those with bulbar weakness. I was the first one at this center to try the reboot so I'm proud that because of me, others might too get help. I don't know how long this will last, and yes, I still take Cellcept and some IVIG. Over time, if I continue to be stable, we may try and wean those away, but for now...to have my LIFE back...it's a small price to pay. Anyway, thought I'd update. Feel free to ask questions. |
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