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Senior Member
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Senior Member
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Yeah, my family was pretty much the same way. I think in some weird way they just couldn't handle it. It took a lot for me to finally be hospitalized, but then I was in the ICU for days - thankfully - I think it truly saved me life! I've also got a great neuro who gets me in IMMEDIATELY when I start to feel weak or have "wonky" eyes......I hate the PICC lines, but they are great once they are in! Plasmaphoresis was the worst for me - absolutely horrible - followed by 4 days of IV IG a couple of months ago.........don't get me wrong, I was really weak and swollen, but it worked! What were you initial signs of MG? What meda r u on? Take care and let me know how you are..........Erin
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Originally Posted by GaBelle1
I became ill over 10 years ago but didn't get a diagnosis until 5 years after that. I've never been in crisis enough for a respirator, thank God, but I've been hospitalized 3 or 4 times because my breathing was tanking. Luckily I've got a neuro that listens and gets me into the hospital quickly for a few days of IVIG if I need it. I'm on mestinon and Cellcept, and I get IVIG every 4 weeks. I'm still working, but I am blessed with a very supportive husband and daughter. They have taken over the house. No real eyesight problems except some blurriness in the evenings. Lots of arm and leg weakness. Definite breathing problems, my voice gets raspy easily, and choking is an occasional issue. I've learned what I can manage and what I can't pretty much.
My mom said forever that I "looked fine" and nothing was probably wrong. I hate hearing how good I look...I have gained about 40 pounds thanks to this stupid disease.
Well, that's my venting for the day...
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Erin
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