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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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Hi Jana!
Hey there! It is so hard to put on your "big girl panties" and pretend everything is OK when it's not.
You HAVE found the right place to vent! Everyone here is so great!
I have really low bp as well, in fact mine is about the same as yours - granted there are days when it goes sky high, but that is only since the prednisone.
I miss the heat so much! I live in Texas and find it had to get around when i is above 60 or so. I used to tan all of the time and loved to feel the sun on my face.....I miss it!
When were you dx'ed with MG? What meds are you on?
Erin
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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Erin .
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