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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#6 | ||
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Yeah, it just kind of freaks me out sometimes, because it doesn't only feel bad physically, but mentally too.
I do have overall weakness, but my bulbar symptoms are the worst. My legs (or hips I don't know) are very weak too; I'm in bed or wheelchair most of the time. Breathing is also way to difficult, but I do not need fulltime respiratory support. My eyes are very good, I have the mildest ptosis ever. It's from the nose down I guess. Yeah, I take cellcept, MTX, prednisone, mestinon of course and I started plasmachanges or whatever they're called. Prednisone is the only thing that seems to work, but the side effects will kill me ( I got a steroid psychosis end of 2012), so I can't higher the dosage unless we'll start the medicine to take care of that (they really want to start a cocktail of statines, lithium, insulin, and all kinds of scary stuff). I still haven't given the green light for this because I'm concerned this will just be the start of a downward spiral - At least now I still have myself, my intelligence, my memory. I am sero positive by the way. |
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