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.

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

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.

Hi Jana! Welcome.

I love your 'big girl panties' comment. So true. It is really wonderful to have a place to come to where you can gripe about things that only other MG'ers can appreciate. I have wonderful support (hubby, friends), but I can sense that even they don't quite grasp the really good day followed by the sorta crummy day!

On my 'sorta crummy days', my hubby tries to blame it on a "bad night of sleep"....if only it were that simple!!!! lolol

Once again, welcome Jana.
Sue

Erin, I was dx'ed in 2005 after a couple of years of not being able to whistle -- YES, that was my only symptom at first. The story of my dx is a fairly long one -- I'll save that for another time.

I am only able to tolerate Mestinon (LOVE IT) -- it is still somewhat helpful in all aspects EXCEPT talking. I can talk enough to "get by" -- I can say about 4 or 5 words before slurring. If I try to continue talking, I become unintelligible after about the 10th word. Can't complain though -- things could be MUCH worse!!

Rob D., I have an MG friend who is CONSTANTLY trying to get me to move to Arizona! I live in Tennessee. We usually have fairly mild winters -- last year was the exception -- I was totally miserable. This summer wasn't so nice, either -- too much rain, not enough sun. We had a drought here a couple of years ago -- it was soooooooo dry -- I had the WORST asthma of my LIFE!! I don't think that I could tolerate the desert air. I've been doing real estate searches in Alabama and Florida -- just in case I ever win the lottery (LOL)!!

Rob D., now you make me wonder if Bulbar and the need for heat ARE connected. hmmmmmmmmm -- I'm always trying to figure things out. I was a math teacher -- puzzles, you know.

Erin, with all of the talk of Vitamin D levels and autoimmunes, I no longer wear any sunscreen. Of course I am careful not to be out during the unsafe hours between 11:00 and 2:00. My neuro checked my D levels at the end of LAST summer (2008) when I had a good tan -- and I was only at "30", the bare minimum for "normal". He said that I was the ONLY one of his patients who had even tested "normal" -- all others were VERY deficient.

I'd love to just take the vitamins -- but, past experience with vitamins has not been good -- I've had reactions to the binders. So, every sunny day you will find me outside -- even in the coldest weather -- for at least 10 or 15 minutes -- exposing my face, hands, and as much of my arms as I can tolerate.

Thanks, SueV!

Hey Jana,

I have bulbar MG too and have never been able to whistle! It was funny, one time when I was feeling very strong after a plasma exchange, I tried to whistle and almost did it! First time in my life...lol

The heat, however, is very bad for me!


Take care!

Nicky, LOL! Even though I "died" after my first and only PEX, the next day, I could whistle for about THREE HOURS!! I was sooooooo excited. But, then it went away. I MISS whistling -- a LOT more than I miss talking.

Thanks!

Hey Jana,

My last set of PLEX nearly killed me too...My BP went to 58/40...It was a horrible experience that I hopefully will never endure again...I don't plan on having any more treatments for a very, very long time...Even if it does help me *almost* whistle...lol

Another thing that I can't do is bend my lower lip down...The PLEX helps me do that too, but it only lasts for about a day...I guess the antibodies don't like that maneuver...haha...They're very anti-whistling and anti-lower-lip bending!

What a strange illness we all have

P.S. I miss singing the most!