Member
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Join Date: Aug 2010
Posts: 109
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Member
Join Date: Aug 2010
Posts: 109
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Wini, listen to Erin; she is giving you some good advice.
I never test positive. Yet, I respond to Mestinon, "had" been diagnosed with Bells Palsy a couple of times, weaken nerves, and have a prominent thymus.
I know this is a tricky disorder, so I wanted to know if race had a role in this. I'm black.
What I discovered as the reason why I never test positive is because 75% of black ocular MG patients were seronegative and 68% of white ocular MG patients were positive in this one study I read.
Now, if I didn't have ocular MG. (The droopy eye was temporary for me. I do have weak eye muscles. However, the typical MG droopy eye only lasted for maybe 2 or 3 months out of my life) I probably would have stood a better chance of showing up positive.
Today, the neurologists -- there were 8 of them -- were split in the middle.
I had every test in the book, and I went back to the older neuro who told me right off the bat that I had MG. He just took one look at me and ordered up some Mestinon. (He was the 2nd doc to tell me. The first one I couldn't understand, because his accent was too thick. Plus, he never gave me anything for it, but something to regenerate my nerves.)
Over the years. . .
Listening to other docs and my own doubts about having the disorder took me on a whirlwind discovery of nothing but seronegative MG.
I went back to the 2nd neuro when my symptoms were worse, and he upped my mestinone. Since, he is about to retire, he referred me to a doctor. She is young but very knowledgeable of MG. She told me that I can pretty much tailor the dosage to how my body feels at the moment.
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