Does anyone else do better in the heat?
 

I know most MGers have a lot of trouble in the heat, but I don't. In fact, this is the second spring in a row that I've felt much better when things warmed up, and even really hot days don't bother me (I live in southern New England, and we don't have an air conditioner). Last summer I was even able to go to the ocean and bake in the sun.

My neurologist suggested that my heat tolerance, my seronegativity, and my lack of response to Mestinon might indicate that I have antibodies against a different part of the neuromuscular junction, but that's just speculation. My eye symptoms are also mild-to-none. I've never had ptosis, and only a couple of episodes of double vision (lasting hours) since I first came down with symptoms in October of 2009. I tested negative for MuSK and LEMS, too.

I've been having a "good spell" for several weeks now. Don't know how long it will last--but I'm enjoying it while I can. I don't think I'd say I'm in remission, because I still have symptoms. But I'm able to do things I couldn't a month ago.

Abby

I suspect New England heat is not the same as unrelenting TX heat! Come on down about August and give it a try! Lol.

I actually do quite well until the temps get into the 90s, and even then I don't get really weak, just hot. Over 100 I do have to be careful. My daughter swims on a team so I have tested this out over many summers.

If I can get a chance to cool off periodically I do OK. If not, I do feel the effects after a few hours/days. I've also noticed a big difference in just relaxing and enjoying the sun and say trying to do heavy yardwork in the heat!

Enjoy the good times!

Abby, I am just the opposite of you. I have a lot of eye symptoms daily, constant double vision but my new prism in my eye glasses help a lot. I start feeling bad effects of the heat at 70 degrees, by the time it gets to 90, I can barely walk the 20 yards to the mailbox. I have already had the air conditioning on for weeks. Mestinon gives me good temporary relief. I am seronegative but they have not tested me in a while and my MG has had a steady downward trend.

I think your doctor is right about it being a different antibody. While I was home on disability, I did a lot if research on MG antobodies and found there are a lot more antibodies identified by clinical research with different clinical presentations, But there are no commercially available test of them. if you want i can private message you what I found and the links.

kathie

Hello Abby :) It's always good for us to hear that someone is doing well; it's inspiring, if it's one symptom or ten. Your post shows us how different we can be. I call it, "MG, with a twist." I'm outside the norm on a symptom. More often than not, I improve as the day goes on. Though quite tired around 3:00 to about 6:00pm, I have a general burst of energy in the evening.

Live in Fl-good so far
 

I am just newly diagnosed so I don't have a lot of experience yet. It has gotten to 90 and I am still doing Ok. I don't do yardwork or exercise in the heat. I started with ocular symptoms that progressed to slurred speech, breathing problems and neck weakness. I am seronegative and have not yet been tested for MuSK or LEMS.

Cait-I would love to get those links too, if you don't mind.
Sandy:Grin-Nod:

Fortunatos, I also have that pattern of feeling strong, then tired around 3-6 and then more energy again. I always assumed it was because my kiddo comes home and I have to cook dinner, feed pets, and do other stuff I don't necessarily WANT to do all the time, and once it's done....I'm FREEEEE!!!! :p

:D:D:D I can relate!

....It has gotten to 90... :eek:

....I don't do yardwork or exercise in the heat...

Sandy...What's heat? :D

Sandy, I have been updating a document with all MG antibody info and good MG articles I find. I will try to upload it. I hope it works.

kathie

Kathie I would love to read about the different antibodies. I am positive for 4 so would love to know more.
Mike