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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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I have been reading all your postings for about a month now but felt very funny about going on myself but I feel we all have alot to learn from each other, and it also reminds me I am not alone. I have had MG for 19 years now, and yes remission does occur I was in remission for 10years or least off of medication for that amount of time.
Around a year and half ago I started having vision problems followed by facial and eye droop, general weakness, lose of voice and breathing problems. I have been in 3 crisis situations since April but lucky for me no vent. I currently take 40 mg of prednisone daily, Imuran 150mg daily, Mestinion around 3x daily,pepcid 20mg and throw in some vitamins for good measure. I also have to go for plasmapheresis 3x a week and now after one of those treatments I get 1000mg of solumedrol, talk about feeling like the Pillsbury dough boy. I never imagined I would be facing this "nightmare" again, but it's back and yes I am angry but I keep going and try not to let anger win. I continue to work as much as FT hours some weeks. I have a wonderful husband and 4 great kids and do have the support of family and friends. I still though hate to rely on others and want to do the most for myself. I don't like not being able to plan anything since you never know how you are going to feel. AND PREDNISONE JUST STINKS.LOL I will be getting my 3 round of Rituxan in Sept, and I have noticed no one else has made any postings in regards to getting this treatment. What are your doctors views on this? Finding the right doctors is a definite plus, there is to many of us not getting proper treatment and definitely to many being told it's in your head. I am so glad I have the proper care now. I can only tell you that there is more treatment now than doctors were doing 19 years ago. I hope you all have a better day and this posting works since it's my 2nd attempt and now I am tired. |
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"Thanks for this!" says: | Hockey (08-12-2009) |
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