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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Junior Member
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I wanted to post a quick update. I received a "reboot" late Nov to early Dec. This included 4 days of high-dose Cytoxan (chemotherapy) in the hospital. This was followed by multiple doses of a drug to stimulate bone marrow growth (painful process!) It's an aggressive treatment and a bit risky, but I am convinced it worked. I have been waking up without pain, double vision, fatigue and I can swallow! I have lived for 3 years never knowing what kind of day I would have. 16 hospitalizations in under 3 years...My eye has very little droop and breaths are full. I realize it's a bit early to jump on tihs one, but I do need to say that I have not felt this good in years. My Neuro was thrilled when I saw her today- strength was better then she has ever seen from me. All I told her was thank you for taking the risk.
I don't know if it would work for everyone, and the side effects are not great...in fact down right horrible, but If this can give me back a life..welll worth it. Like I mentioned earlier, j.Hopkins has done the most research on this one. Take care everyone and have a wonderful Christmas! Angie |
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