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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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Hey crew - its fantastic to be back home - FINALLY -
Had yet another turn for the worse / crash and burn crisis that set me back / : BUT it turns out to have been from too much Mestinon - docs had me on same dose post surgery as I had been pre surgery..... (60mg q3-4hrs)... I'm down to 30mg x 2 / day and breathing / moving fine. No sooner get that straightened out (and breathing on my own again)... bodywide HIVES for over a week..... that did not respond to steroids..... 6 hours after getting the last staple out - hives disappear.... General concensus seems to be that even though staples are surgical steel, there is a minute amount of nickel... and I already had reaction problems to costume jewelery (usually made of nickel....). At this rate the list of what I'm not allergic to is going to be shorter than the list of what I am allergic to! - So no more staples for me - sew me up and make me look like bride of Frankenstein.... But regardless of the ups and definite downs, I'm glad I did the thymectomy - the initial path came back hyperplasia but no wonky cells.... but it was the sheer mass of the thing: 188g - surgeon told me "normal" is about 50g while mine was twice as thick as any he had ever seen or removed and he sincerely felt it would have only been a matter of time before it shifted ..... So now I'm home and trying to recover and follow doc's orders about doing very little ![]() |
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"Thanks for this!" says: | sugrkiss (02-06-2012) |
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