Hi,

The heat is killing me at the moment! Its no where near what you have in the states, but its hot for us Brits! I guess its what ever base line temperature you are used to.

I find I get more breathless and everything feels heavy. Ive had to up my mestinon to 120mg ever 4 hours.

I love sitting in the garden but even under a parasol its just too hot.

Take care
Rach x

i went on-line and found coolbandanas that you soak in h2o ,dry abit then can put around head or neck. it's been a lifesaver in the yard. i sweat even walking in a store soo much that i'm drenched from hairline to top of shoulders,when daughter was moving this past week-i bought 1/2 dzn. plain old "cowboy bandanas".i tyed them on head like an "old lady" as the kids said but they kept my face much drier!! i went grocery shopping sunday and sure wished i had one to put on .i would have worn it no matter how it looked!!even these i have to change several times cuz they get soaked through. one good thing is you don't have to do hair!! have a good week!!

Hi,

Where can I find this information that acetylcholinesterase increases with heat?

Thanks,

HI

Hey Dottie,

Know exactly what you're saying. Went to let horses out this morning and I prayed my right arm was going to be able to hang on til I got the fiesty one to the pasture!! lol I know I can't ride anymore - muscles just won't last for that ...esp in the heat.

What did you show - - I was hunter/jumper for many, many years. In high school and college I was a trainer/instructor at show barns on the side. Then got a 'real' job and bought young potentials to train evenings, show green, and sell. Had a blast!!

My last one got under my skin - and I broke all econonmic rules. She's 27 and I got her as a 3 year old! But we've had some wonderful years together!

Sue

Re: Acetylcholinesterase and Heat. Go to PubMed and enter "Acetylcholinesterase Heat" or Cold or Temperature.

I've got to go to a wedding now or I'd post some articles.

That is really helpful (the first search suggestion) because I haven't been able to get a bunch of articles quite like this by googling.

Nonetheless, if you could post a few at some point, I'd appreciate it because I really liked your explanation and can't find anything similar enough to it.

Thanks so much.

+1K on the heat! i've been learning to deal with it. 90-100 deg.. i've had to alter my work habits to avoid prolonged exposure in the hottest part of the day. difficult because mornings are not so good for me due to all the pills i take when i first get up. sometimes you've got to get creative.

Heat Intolerant, Do you have an informal name?!

There is no MG-specific info that I have found about heat and acetylcholinesterase, if that's what you are looking for. The studies done are all about change in temp (and pH, etc.) on that enzyme. Both high and low temps can increase production of it. Here is one article:

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

And this one on AChE and "sweat rate" was rather interesting.

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

Bottom line, stay out of the extremes of heat or cold! Sorry I couldn't be more helpful. I wish they would actually study MGers regarding this issue. Maybe they could come up with something useful.

Annie

You may call me Ren. I'm a renegade from another forum, DINET (dysautonomia).

Your post looked so interesting that I signed up here to ask about it.

Many of the members on that forum have used or tried Mestinon and some also test positive for MG or on some tests for MG.

I am very heat intolerant; some (most) people on DINET are as well to varying degrees -- but I was wondering about how heat intolerance on that forum compares to people here and something about why Mestinon is used for that group of diseases as well as MG.

It seems to me that these phenomena may be related across these diseases.

Looking at the articles, I am not finding that the level of acetylcholinesterase increases in the heat. (I am only looking at the abstract I think. Is it in the articles themselves?) What I have seen mostly is that there are ACh-receptor binding antibodies which must be what makes people heat intolerant.

Do you happen to have noticed whether any of the people on this forum had to or did move because of heat intolerance?

My experience of heat exposure seems to be different than others with MG. I live in a hot climate and love it even after my recent diagnosis of MG. I work outside in the sun two days every week for 6-8 hours. My body is adapted to the heat and I am intolerant of "cold" temperatures (anything below about 78 makes me shiver).

I have found that I need to drink more water than before MG, but that as long as I keep drinking the heat doesn't effect me. I do have to slow down and work at a much slower pace than before MG. I read the articles that relate to heat and my opinion is that HEAT STRESS is bad for us MG sufferers (not necessarily the heat, but we all have different heat tolerances). I am not saying heat is good for MG because I don't know the answer, just that my experience is saying that heat is okay since I am used to it and feel okay in it and keep hydrated. I am still cautious about the heat (I stay near a place where I can get out of the heat if I need to) due to what I hear from everyone here.

As far as cold temperatures go, I seem to be even more intolerant of cold that before I got MG. I get tired and have a hard time talking/eating/walking/seeing after going places with air conditioners running. After spending time getting cold I have to go to bed early that night and feel tired for about one day.

I have had MG for only two months so my heat/cold tolerance may change.

Does anyone else find that they need more water than before MG? I seem to be thirsty all the time even when not out in the sun. Maybe my thirst is due to the Mestinon since I find that I have to drink 1-2 glasses of water when I take Mestinon to avoid digestive system pains.