Oh Missy! I am so glad to hear that you are feeling better! That is wonderful!!!!
This may sound dumb, but how many people have the MuSK MG? It was really scary when the NURSES in the ICU didn't know about it! What the heck?!? I couldn't believe people in the medical community had no idea what I was talking about - in fact they looked @ me like I was crazy!
Yep, the girl claims to be drug free- no steroids, nothing! I know it sounds petty, but I'm still jealous b/c I haven't been quite so lucky! Stupid, huh?
ERin
Quote:
Originally Posted by MissyGirl
I got markedly worse after mine. Turns out, years later I discovered I have MuSK MG, and thymectomy isn't really indicated for us.... sigh. I will add, too, that a couple of years after the thymectomy, I did become symptom free, altho I was on several meds. That lasted 2.5 years. Just recently, I've had a vast improvement in my symptoms and I'm cautiously hopeful that maybe another "symptom free phase" is on the way. Time will tell.
Erin, that woman with 11 years remission? Is she med free?
Missy
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