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

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

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

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

Hey there! Still loving the new school?

The concert was FABULOUS - what I saw of it @ least! I loooooove Elton John and Billy Joel! I did feel bad b/c Mike left, but I was feeling pretty yucky and barely made it up the stairs!

I would love to move to Scotland! O have never been there, but my family has and says it is gorgeous! As it is, we have to find somewhere to go during the summer or I will be a crazy shut in! LOL!

I'm gonna set up an office from home and get lots of work done b/c I go stir crazy when I'm here - that and guilty for not getting more done.........

I can relate to goig out in the cold and people looking @ me funny b/c I'm not wearing a jacket - anything warm and feeling GREAT! MY face just balloons to where my eyes are almost swollen shut by the time I get home if I get in ANYTHING above 70 degrees - I was always so cold before.....

Are you still swimming? How are you feeling?

Can't wait to hear from you!
Erin

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

Yep.......cankles..the great equalizer! Nothing quite so sexy as those awful things........I never wear skirts anyway, but I love my capris but no longer wear them either....LOL!

My best friend's mom taught me how to swim....she was the best! I still remember how patient she was with me...I loved her so much.....

Are you having a great time with your folks?

50's sound perfect to me! Pre MG I wouldn;t be able to handle to handle the cold, but now when it is in the 50's I walk around in tank tops - needless to say people here in Texas think that I am nuts, but if I wear a jacket or sweater I am a sweaty hog......LOL!

Cant wait to see the pics!


Erin

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.