Junior Member
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Join Date: Jan 2010
Posts: 54
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Junior Member
Join Date: Jan 2010
Posts: 54
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Thanks for replies
Yes, Ive been on Mestinon for 20 years and it has worked well. Now Ill be 50 in Dec and my symptoms have worsened the past 3 years. Ive been on oral steroids several times and IV's in the hospital a couple times. Both seem to pull me through the breathing difficulties and eyes get better but nothing seems to be improving the legs and hands. We tried Imuran but I thought it was going to kill me. High fever, chills and vomiting...all of which made my symptoms worse. My neuro has mentioned trying plasmapheris or IVIG and, after reading some posts, I may agree to trying one of them. (I, like others, worry about insurance coverage.) Although, if I could get that "normal life" that the brochures talk about...it would be worth it. I agree also that as weak as I am, I couldnt handle thymectomy right now. (I had to have a lumpectomy two years ago and didnt do well afterwards). I just know eventually, we will be blessed with grandchildren and I want to be able to hold them and play with them. I will talk more to neuro about my options....thanks!
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