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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.![Frown](images/smilies/frown.gif)
You HAVE found the right place to vent! Everyone here is so great!![Big Grin](images/smilies/biggrin.gif)
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![Hug](images/smilies/hug.gif)
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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