Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 05-26-2013, 08:18 AM #1
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Default 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
Stellatum is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Fortunatos (05-26-2013)

advertisement
Old 05-26-2013, 09:08 AM #2
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
Default

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!
4-eyes is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Fortunatos (05-26-2013), Stellatum (05-26-2013)
Old 05-26-2013, 09:11 AM #3
cait24's Avatar
cait24 cait24 is offline
Member
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
cait24 cait24 is offline
Member
cait24's Avatar
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
Default

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
cait24 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Fortunatos (05-26-2013), Stellatum (05-26-2013)
Old 05-26-2013, 09:27 AM #4
Fortunatos Fortunatos is offline
Member
 
Join Date: May 2013
Location: Canada
Posts: 194
10 yr Member
Fortunatos Fortunatos is offline
Member
 
Join Date: May 2013
Location: Canada
Posts: 194
10 yr Member
Default

Quote:
Originally Posted by Stellatum View Post
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
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.
Fortunatos is offline   Reply With QuoteReply With Quote
Old 05-26-2013, 10:32 AM #5
sandy56 sandy56 is offline
Member
 
Join Date: Apr 2013
Location: central florida
Posts: 125
10 yr Member
sandy56 sandy56 is offline
Member
 
Join Date: Apr 2013
Location: central florida
Posts: 125
10 yr Member
Cool 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
sandy56 is offline   Reply With QuoteReply With Quote
Old 05-26-2013, 11:02 AM #6
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
Default

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!!!!
4-eyes is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Fortunatos (05-26-2013)
Old 05-26-2013, 12:59 PM #7
Fortunatos Fortunatos is offline
Member
 
Join Date: May 2013
Location: Canada
Posts: 194
10 yr Member
Fortunatos Fortunatos is offline
Member
 
Join Date: May 2013
Location: Canada
Posts: 194
10 yr Member
Default

Quote:
Originally Posted by 4-eyes View Post
....I'm FREEEEE!!!!
I can relate!
Fortunatos is offline   Reply With QuoteReply With Quote
Old 05-26-2013, 01:02 PM #8
Fortunatos Fortunatos is offline
Member
 
Join Date: May 2013
Location: Canada
Posts: 194
10 yr Member
Fortunatos Fortunatos is offline
Member
 
Join Date: May 2013
Location: Canada
Posts: 194
10 yr Member
Default

....It has gotten to 90...

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

Sandy...What's heat?
Fortunatos is offline   Reply With QuoteReply With Quote
Old 05-26-2013, 03:02 PM #9
cait24's Avatar
cait24 cait24 is offline
Member
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
cait24 cait24 is offline
Member
cait24's Avatar
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
Default

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
cait24 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
sandy56 (05-26-2013)
Old 05-26-2013, 03:16 PM #10
pingpongman's Avatar
pingpongman pingpongman is offline
Member
 
Join Date: Aug 2010
Location: South Carolina
Posts: 714
10 yr Member
pingpongman pingpongman is offline
Member
pingpongman's Avatar
 
Join Date: Aug 2010
Location: South Carolina
Posts: 714
10 yr Member
Default

Quote:
Originally Posted by cait24 View Post
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
pingpongman is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
This Heat! Kitty The Stumble Inn 17 07-08-2012 01:57 PM
The Heat and MS SallyC Multiple Sclerosis 11 06-22-2012 09:58 PM
The HEAT! marion06095 Multiple Sclerosis 25 06-28-2010 10:53 AM
Heat and MG scarpettafan Myasthenia Gravis 19 08-26-2009 11:57 AM
I think my cat's in heat again Doody Pets & Wildlife 8 06-27-2008 05:11 PM


All times are GMT -5. The time now is 12:44 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.