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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Hey Guys- hope your all doing well. I wanted to give you an update on me.
I quit work it was too much. Which is alright, but I have a car payment and I hate having my mom have to help me..oh well though could be worse! I am still on imuran...not looking that promising. Going on 300mg...still not that strong- having to take naps, bad headaches, easy infections, double vision bad at night, etc. Im still on 50mg of prednisone...im starting to wonder if this isnt MG...something else maybe? Im having infusions montly (IVIG) 4 days x 40g of gammaguard. I am having really bad gas...coming out both ends, and it seems like GERD or something, because whenever i eat or drink anything- its always coming up in gas form. I always feel bloated and im not sure what to do about that I guess. I assume its just from the prednisone. I tried getting into a trial at Northwestern for a stem cell trial- rebuilding my immune system with my stem cells after doing chemo- they said no because- only because I dont have a + antibody test....everything else I met for criteria. Im winding down my last days here in Maine- Im going to mexico in a few weeks, and then moving to california. Hope your all doing well- let me know! |
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