Originally Posted by Scots Kat

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

Originally Posted by AnnieB3

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

Originally Posted by momma3love

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!

Originally Posted by Scots Kat

Ugh! Cankles - I SO know what you mean. I used to have pretty good legs, athletic and heathly looking. Now they are marred by stretch marks and it's like a big tube of fat that follows down from my hips.

Anyways, the new school is fantastic and I'm still swimming twice a week. I even taught a kid how to swim last week. It was a great feeling to watch her swim without armbands for the first time.

My Mom and Dad are hear for a visit and we have a two-week holiday at Easter so that's great. The weather here has been sunny, but cold by Scottish standards (freezing by yours I'm sure). It's been about 53 ish during the day and cooler at night. The wind can be quite cutting. I haven't forgotten about you wanting to get some photos of castles etc (I'm going to try to get some up on Facebook someday soon).

I hope your Ivig goes well - I'll be thinking of you! Take care of yourself and avoid that heat (if you can)!
~Kathy

Originally Posted by Rachary

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