Quote:
Originally Posted by jana
Annie, I don't talk about this much with people I know "face to face". I prefer to put on my "big girl panties" and pretend like everything is A-OK. But, in a group with other MGers, I feel like I can "let my hair down" and be "real". It is really nice to be able to talk to other people who "get it".
As far as I know, I have just plain ole MG -- I am AChR positive. I've been tested THREE times (LOL)!!! My first test was with by the general neuro who diagnosed me -- the second was by the top ten teaching hospital he sent me to when I became "fragile" -- and the third was by the specialist that was recommended to me by another MGer. I continue to see the general neuro and the specialist -- I "fired" the top ten docs. I never presented with a droopy eye or DV in the early stages, so each doc wanted to make SURE that I really HAD MG.
No one can figure out WHY the heat doesn't bother me -- I AM an oddity. I am miserable in the cold weather. YES, I have had my thyroid checked over and over -- it is perfectly normal. I do have very low bp -- normal for me is around 90/60 and I am past menopause. I am an oddity -- but, I do know 2 other MGers who crave the heat.
I LOVE my Mestinon -- don't know what I would do without it. I take 6 to 10 60 mg tablets a day.
It is nice to find somebody who is in the "same boat". MG is rare enough -- our particular situation is even rarer.
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Hi Jana-
For what it's worth I also feel better in the heat and sun and I also have the bulbar form. Strange, isn't it? Needs to be mentioned though that I'm 56 yr old male who has lived his whole live in southern Arizona so I'm quite at home in this environment. Nonetheless, many have mentioned becoming worse in the heat - when heat never bothered them before the disease. I do love the sun and warmth!
Rob D.