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Old 04-05-2011, 03:58 PM
jankel jankel is offline
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Join Date: Feb 2011
Posts: 16
Heat Intolerance

My doctor said that I have "severe" heat intolerance. I can't function if it's warmer than 70 degrees. My family walks around with long sleeves, sweaters, hoodies etc on while I'm wearing shorts and a T shirt. It's difficult for us to go out because restaurants, movies etc places seem to keep it warmer now expecially in the summer. I guess going green is a good thing for these companies because their electric bill for air conditioning is lower.

Anyone else having this type of problem and any ideas on what to do? I feel like such a freak because you can actually see my face, arms, neck and legs getting redder and redder as the heat increases. Never mind the other MS symptoms that come out to play when I get hot (smile).
Old 04-05-2011, 05:31 PM
jessiesmom jessiesmom is offline
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Join Date: Jan 2007
Location: Northern CA (near San Francisco)
Posts: 313
How to Deal with Heat Intolerance

I tend to start wilting badly when the thermometer hits 85 degrees. Luckily here in Northern California (just south of San Francisco) that does not happen too often.

Have you thought of looking into buying a cooling vest or scarf? I know that a lot of people on this discussion board have used them with good results.

Good luck.
Old 04-05-2011, 05:55 PM
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lightkeeper lightkeeper is offline
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Join Date: Oct 2010
Location: california
Posts: 20
Oh ya . The heat is a problems where I live. I'm in the high desert So cal. Temp. have gone up to 113+ or so . Between May- Sept it can be horrible.
I'm getting a cooling vest this year but I've also put in for medical baseline for lower electric bills. Water and gas have the same programs. Drinking a lot of water helps.
The heat also makes me really weak so I'm in a wheelchair . My legs swell a lot with the heat as well. You just adjust the best you can.
Old 04-05-2011, 06:59 PM
palmtree palmtree is offline
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Join Date: Jun 2010
Location: LA
Posts: 592
Just got off the phone with Frigidare. Trying to find the coldest wall unit air conditioner there is. I spent the night baking, my face is red as a beet and I have two air conditioners going full blast.

I wish there were refrigerators we could buy to sleep in. Around 45 degrees would be just right for me!
Old 04-05-2011, 08:23 PM
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RoyaleMSer RoyaleMSer is offline
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Join Date: May 2010
Location: Sinclairville, NY
Posts: 370
I got my cooling vest free from the NMSS. The MSAA also provides free cooling vests. You just have to be under a certain income limit and provide them with a tax return. It's an option for those who can't afford to buy one!
Rae Roy
Old 04-08-2011, 01:13 PM
jankel jankel is offline
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Join Date: Feb 2011
Posts: 16
Heat Intolerance

Thanks for the info...

My concern is, could there be something else wrong with me? It just seems so abnormal and freaky.

For those of you experiencing heat intolerance, please let me know if it feels like your blood is being heated up? I feel like my body is heating from the inside out. When I'm hot, I'm not sweating, just get redder and redder. If you touch my arms, legs, face etc, it is hot like on fire.

By the way, I asked my Neuro if I have a spot on my Hypothalamus which controls the body temperature but his reply was "what does it matter, there's nothing you can do".

For me, I would think it would be important for the doctors to know where your spots are and the symptoms you are having. How else will doctors be able to better understand the disease and be able to help us?
Old 04-08-2011, 01:32 PM
rubberlegs rubberlegs is offline
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Location: under water
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"By the way, I asked my Neuro if I have a spot on my Hypothalamus which controls the body temperature but his reply was "what does it matter, there's nothing you can do".

ha ha ha awee, thats actually funny! did you have a good laugh with Neuro?
Old 04-08-2011, 07:53 PM
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akafearless akafearless is offline
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Join Date: Oct 2009
Location: mechanicsville va
Posts: 277
hot flashes

I've been wondering if i'm still having hot flashes or if i have a lesion there. I guess that is why i would want to know.
Yeah i guess there is nothing i can do about it but be hot but it would be nice to know.
Old 04-08-2011, 08:36 PM
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HereIam HereIam is offline
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Join Date: Nov 2007
Location: New England
Posts: 191
Jankel, if misery loves company, just like my name, HEREIAM.

I also have severe heat intolerance. Over 70 degrees and I am toast. Before I was diagnosed and had the heat intolerance it was a big joke when we were on summer trips: "Hey, look at Mom, it looks like her head is going to explode." Red as a beet. What a laugh riot that was.

When I over heat, everything breaks down, starting with peeing my pants, and going on to being unable to swallow, severe tremors, unable to walk, uncontrollable crying. It is not a pretty sight. The only way I can get out of it is for someone to drag me kicking screaming and crying to an ice cold shower and hold me under it.

Does this sound familiar?

I have tried cooling vests with ice packs, neck/cervical spine cooler with ice packs, and it seems weird, but those ice packs are just not cold enough.

So, I stay locked in the house all summer, with the a/c on. I live in New England, and often it's brutal here with the heat and humidity, but also we can get a temperate comfortable day and those are sheer heaven. In the evenings my husband often takes me down to the ocean and immerses me for an hour or so. The water in New England are freaking cold and it feels so good!
Old 04-08-2011, 08:41 PM
Lou Lou is offline
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Old 04-09-2011, 04:48 PM
jumpinjiminy jumpinjiminy is offline
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Join Date: Sep 2010
Location: US
Posts: 1,142
Count me in, but I never recognized it as 'heat intolerance' until being introduced to the wonderful world of MS. I've noticed it getting worse and worse over the last several years, so much so that I've insisted on keeping the AC on every summer because I just melt into a big, sweaty pile of grouchiness.

Today it's 68F, I've been out in the garden trying to clean up for the season. It feels like 80F to me. I'm in shorts and a tank top, sweating, shaking, eyes blurring, and getting a headache. This is my first attempt at gardening yet this year with the knowledge that something is definitely off in my body. I have no idea what to expect, but will adjust as I go along I guess.

Testing the limits . . . and I have a cooling hat on the counter just in case. I should have used it today.
Old 04-10-2011, 12:26 AM
Thinkimjob Thinkimjob is online now
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Location: Goondiwindi, Australia
Posts: 2,334
Hard to beat the heat

Oh yes. It gets up to 42 degrees Celsius most days in summer round here. I stay inside as much as possible.
And hot showers are a thing of the past, too. I used to love a hot water bottle, or an electric blanket in winter. No more. If I lie on an electric blanket, I can hardly get out of bed after ten minutes.
No more lovely warm baths. No more jacuzzis, and certainly no more saunas.
Even a bloody hairdryer is out!
Our house is air conditioner city. Everyone else is freezing to death, but I figure they can put on some more clothes - I'm not going nude. For which they are, no doubt, eternally grateful.
Can't wait for menopause.
Old 04-10-2011, 01:20 AM
MeSs to live with MeSs to live with is offline
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Join Date: Mar 2010
Posts: 20
Heat intolerance leads to much worse

To Jankel & all others remarking on heat intolerance:

I was diagnosed with MS about 6 years ago & had some problems with heat. Each summer it has gotten worse & I have become so vulnerable that last summer I became 2 shades lighter than Casper from hanging out in my house all the time with the AC cranked up.

Anywho, my kids drove 5 hours to spend a few days with us with one of those spent taking our 2 grandsons to our city owned fantastic water park. One was diving, the other swimming from the side of the pool to his Dad, over & over & over. I was watching with hubby & we were having the time of our lives. I had a big insulated glass of icewater, a special cooling scarf around my neck, a big floppy brimmed hat on my head & a battery fan blowing on my face. plus we were under an awning tent for shade.

Suddenly, everything hit at once---I was on fire on all of my skin, my legs felt like 2 tons each & very rubbery. I had forgotten my cane & when I finally got hubby to understand how bad off I was, I never thought we'd make it to the nearby office with air conditioning, then to the car & home.

I started having lightening bolt head flares, waves of fiery skin from the top of my head rolling down inch by inch to my knees & legs---all on my left side, my weak side. This went into ice pick stabs in both ears that went all the way to my ear drum, over & over & over. Then the slight numbness on my left side started numbing in a rolling move down my right side including my nose, the roof of my mouth, my tongue & all the way to the bottom of my feet.

This all lasted for about 4 hours until I literally passed out on the couch for super slumber time. The next day, many symptoms were improved except that I started having 3-4 panic attacks daily. I was using a paper bag until my Dr. diagnosed a heat stroke & prescribed xanax for the panic attacks. That was July 2010 & by February 2011 I was starting to regain some strength. I lost about 30-40 lbs after I lost my appetite & gained a nasty taste for almost all food.

So, yes, heat sensitivity is a terrible problem BUT, heat stroke is even worse than a rough flare-up. Take care & caution---stay out of the worst of the heat to try to avoid a heat stroke, do whatever it takes.

Sorry this is so long & really sorry IT IS SO TRUE!!!!!
Old 04-10-2011, 01:25 AM
jkforrest jkforrest is offline
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Join Date: Jun 2008
Location: Nashville, Tennessee
Posts: 98
see 70 degrees seems to be the cut off

I too can't deal with over 70 degrees. Try Steele Cooling vests. They are expensive but I couldn't deal without them. You can buy extra packs to change them out and I would recommend that highly!!!!!

Thanks for the inform re talking to the electric company!!! will do this Monday and hope I get some help!!!
Old 04-10-2011, 01:43 PM
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Scooter24 Scooter24 is offline
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Location: Charlotte NC
Posts: 1,170
Thankfully I don't have the problem until it is about 95 or above, the humidity does get me though, actually I have trouble keeping warm if it is under 75 as I have lost about 70lbs in a year or so.
Plan for the future, but not too hard; itís not your decision anyway

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