No, I am not on a salt restricted diet, though maybe I should be.......I go back in next week so I'll talkto my neuro and tell him..........
I have been drinking tons of water/juice, milk, etc and that seems to help, though the heat really makes me sick!
Those bandanas sound AWESOME!!!!!!!! I am going to get one ASAP! And a coolig vest! The weird thing is once I ice my face down, the swelling goes down pretty quickly.............Pred just sux! I mean who wants weight gain, facial hair and mood swings? Oh, and CANKLES! But I do love the fact tht my neuro is trying to slowly wean me off of them this time......Overall, I have been @ approx 60 mgs for a year! YUck!
When did you have your crisis? What happenend? Did you have to go to the hospital? Are you OK now?
Thanks for all of the great info! I appreciate it!
Erin
Quote:
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 |