Hello all! Just feel like venting tonight - went to a great concert Saturday night (Elton John, Billy Joel - floor seats), but the arena was waaaay too hot and I started feeling awful amost immediately! MY entire body/face swelled to alomst twice their normal size and I was almost too weak to climb the stairs!

My best friend and poor hubby were with me, so Mike and I took a cab home while I iced down my face the entire time.............marked change by the time I got home, but it was so upsetting!

Why on earth do I swell so much if it gets above 70 degrees? Do you guys have that as well? My whole face turns beet red and is enormous.........almost unrecognizable - ......eyes almost swollen shut....

Anyway, after that my entire weeked was shot......I stayed in bed with fans on me and took cold showers - still no change. I was planning on heading to work today, but that didn't work out - still to weak......., though I was abl to take my son to school......that felt great!

Dr. I told me that heat would always be my "enemy" - no joke! I used to tan all the time and was always cold and now I just cannot get cool enough......

Please don't misunderstand me; I know I am very blessed and lucky. I know that having my thyus removed was the right decision.It took YEARS to really get sick, so I know it will take a while to really feel better, but right now I am somewhat limited in my options, although I can (and do) work from home.....but my hubby and son suffer b/c they don't want to go anywhere without me - and I feel really guilty about that...........

Heat just kicks my butt! No doubt about it! I need to move to a colder climate soon - very soon!

Redtail - I don't know how you do it! I would love to visit Australia, but it is just too darn hot!

Do the rest of you experience this extreme reaction to heat?

Erin

Hi Erin,

I do suffer from heat, but no where as near as bad as you, you poor thing. It would be nice to know why it affects you like it does.

Here in Australia in winter/spring time is wonderful, not too hot, and just gorgeous. Some mornings in winter can get down to -5C(23F) in the morning, and up to about 16C(61F) during the day, nice and cool for us here, I love winter. The added bonus of springtime is the amazing wildflowers.
take care

Erin, I know, heat is the worst. It can take MG from okay to awful in seconds.

The swelling and redness are not MG-related though. I wonder if it has to do with the Pred. Are you on a salt-restricted diet? Sometimes that is necessary when taking steroids. I would definitely tell your neurologist and/or primary doctor about this.

The reason heat makes MG worse is that it increases acetylcholinesterase, the enzyme that "cleans up" acetylcholine. We make acetylcholine and then that enzyme comes along to clean it up, then the process starts all over again. Mestinon keeps that enzyme from mopping up our muscle juice so we have more of it. Heat comes along and gives the enzyme the advantage in that tug of war. I know, I'm mixing my cleaning and war metaphors.

Anyway, avoid heat of any kind. I always have cool packs in my car, have the air-conditioning on when it's in the 50's, etc. Even taking my dog outside for a couple minutes in hot weather makes me worse. It's NOT fun. Heat, and overdoing it while out in heat, is what caused my MG crisis. I avoid it as much as I can.

Just make sure you let your docs know about the other symptoms. There are books out there on how to be as healthy as possible while taking steroids that are quite helpful.

At least you got to go out and have some fun at the concert! Just take one of those cooling bandanas (from places like QVC) or something like that next time.

Annie

I also have problems with heat. Oh yeah Hi I am new here. Tho not new to MG.

I avoid heat as much as possible. I break out in hives and welts in the heat. I just do my best to avoid it, but it sounds like I should try the cooling bandannas and stuff. I use sunscreen and still get hives, I know its weird. I just wear really light long sleeves if I go outside on really sunny days. Yeah most of time its just not possible. Too hot!

Hi ya'll.
Erin, have you checked out the cooling vests yet?
I've been kinda really involved with my "other issue" so I didn't order one yet.

The other day when it was about 75 and very sunny here I wanted to go out and get some vitamin D (sun). I stuck an icecube in my cleavage , put some ice in a cap, took a glass of icewater with me and went outside.

It worked! Not real attractive with the ice melting between my breast - I'm sure it looked like I was sweating my butt off, but at least I could stay out there longer than 2 minutes!

I don't get hives or anything, just totally, completely wiped out in a flash!


Try this and see if it helps. If it does, you may want to make that vest a priority.

Hi everyone!
I think you are right Annie, the redness and swelling must have to do with the Pred. I know I've never experienced anything like it before going on the drugs and now I'm like a furnace with clown cheeks! Today we had a fire drill at the school and everyone was whining about how cold it was to be out with no coat on but I felt completely comfortable.

Erin, so jealous of the concert - sounds like it would have been great. You should move to Scotland - as long as you don't mind rainy days. It would be quite an adjustment from Texas!

Take care everyone!
~Kathy

Hi, I'm new here and it looks like I might have MG. CT scan shows a possible thymoma and I get very tired and weak. Funny thing is that I was fine for 6 months last year and then there was a heat wave and I was awful again and have ben sick for months since. Thing is, I have tested negative to the main antibody although the neuro I am seeing is re-testing for it and is testing for the MUSK one as well. So, if that's the case, i wonder why the heat makes me worse? Anyway, they want to take my thymus gland out and I'm scared that will only maing all of this worse. I have had these symptoms - dry cough, tickly throat, light sensitive and tired eyes, intense fatige - for a year and half now and have been managing without medication although it's very inconvenient!
Any comments/thoughts gratefully accepted

Hi Rachary,

It's important to know that the MuSK antibody was discovered relatively recently in connection to MG. Prior to it's discovery, many more people had negative tests for the antibody. The way I see it, I'm only negative for the antibodies they have discovered so far! I wouldn't put too much weight on the blood test. MG is generally dx'd (diagnosed) from a group of tests because no one test can confirm MG and not any other condition.

Having a thymoma would be a biggie, though. And those can be either benign or cancerous, so I wouldn't mess around with that.

Heat sensitivity is a big problem (bigger to some than others, poor Erin) with MG. You should research everything you can on the internet via Mayo clinic, NINDS, NIH, MG foundation, etc. to learn as much as possible about your possible condition.

This forum is a great source for comparing notes as well, and you will find the people very helpful and supportive. I was dx MG in 2004, but just found my way here and am so grateful to everyone!

It may be good to start your own thread if you have questions - you'll get more information that way.

Good luck and keep us up to date.

Yep. The heat really kicks my butt! Must be the pred! On the positive side, I go in next week for another round of IVIG and hope to have my pred reduced right after that! YAY!

I also plan on working from home this summer, as it becomes UNBEARABLE around May, June and July. I'll just set up an office space here and stay out of the heat as much as possible!

We are also having an awning put on our back proch, as well as screens to blok out 90% of the UV rays and heat, so that should reduce our bills quite a bit!

Australia sounds wonderful! I can't wait to see your pics!

Got a lot dones this weekend - so far......cleaned out of my closet, as I have given up on wearing certain clothes, so my little sis is getting whole new wardrobe......I found some really neat HUGE lots of clothes, so I bought about 200 items of clothing for almost nothing...that was exciting!

How are you? are you OK? Sorry I haven;t been on much. I've been really tired after work and Devon's b-day (although it was great) wore me out!

Can't wait to hear from you!
Erin

Yes, the heat can do awful things to you......I can go from from OK to barely there in matter of minutes - not a great thing since I live in Texas.......

From what I have heard, lots of people with MG do not always test positive for the antibodies.......they will want to do a lot of tests on you to rule it out.....You will want a great neuro that LISTENS and doesn't try and convince you that this is in your head........so many really don't LISTEN.......

If you do have a thymoma, they will want to take that sucker out............and you could go into remission! REmission!

Hang in there! It will get better!

Erin