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Old 07-10-2012, 02:32 PM   #1
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What is it about heat?

I want to start by saying I do not have a dx of MS. I am awaiting an appt with a neurologist because my doctor suspects MS. I feel my problems probably have a much simpler answer, but that has nothing to do with my question

I have heard that MS makes heat intolerable. In what way? We have been in a heat wave with temps at 100+ BUT I never would have gone out in those temps anyway. Today is a much more manageable 85 or so. I tried going out and sitting with my children but it was like my body turned to jello and I was too weak to lift my legs which felt like lead. It was all I could do to hold my eyes open and I felt as if I could fall over and sleep forever. My face got red and I just felt... crappy! It was better last summer and I was 8 months pregnant.

I came back in the house and feel much better after cooling down. I am only 32 years old and in reasonably good health besides the problems that I've been having leading me here. So what does the heat do to someone with MS?

 
Old 07-10-2012, 02:43 PM   #2
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Re: What is it about heat?

Your body has a "thermostat" which regulates your body. In order for your body to function properly "all your wiring" has to be in good working order. When your nerves have been affected with lesions and subsequent scar tissue, the "thermostat" no longer works well. Some MSers are not affected by temperatures. For me, in 1982-2002 I had problems if I had heat from my neck up, but after 2002, my "thermostat went on the fritz". Since then, I have discovered I have a high and low temperature range. The upper one varies depending on the humidity, but my low range is about 52 F (11.11 C). Below that I have problems.

There are other diseases which can also make you heat intolerant. If I go out in the heat, I find that either I will go into an uncontrollable sweat or my energy suddenly plummets and I become fatigued. During the summer months, I will "hibernate" during the heat of the day.
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Last edited by MSJayhawk; 07-10-2012 at 02:46 PM. Reason: typo

 
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Old 07-10-2012, 03:28 PM   #3
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Re: What is it about heat?

Thank you for your answer. That helps.

So the scar tissue/lesions would have affected your hypothalamus for this to be an issue then? And that SHOULD have shown up on my brain MRI with contrast. In a perfect world anyway where there are no unanswered questions.

My symptoms def fall more into the category of just a complete draining of energy in higher temps rather than being unable to regulate my body temp. So that would be more likely to fit into other dx as well. Hmmm, just gathering info for my upcoming appts. Thank you.

 
Old 07-10-2012, 04:15 PM   #4
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Re: What is it about heat?

Quote:
Originally Posted by Elmbabies3 View Post
Thank you for your answer. That helps.

So the scar tissue/lesions would have affected your hypothalamus for this to be an issue then? And that SHOULD have shown up on my brain MRI with contrast. In a perfect world anyway where there are no unanswered questions.

My symptoms def fall more into the category of just a complete draining of energy in higher temps rather than being unable to regulate my body temp. So that would be more likely to fit into other dx as well. Hmmm, just gathering info for my upcoming appts. Thank you.
It really is impossible to be able to identify what is causing your problem. I would not necessarily identify your hypothalamus because it really depends on your "wiring". When scar tissue covers your nerve fiber the result can be in-perceivable or it can be as drastic as a complete blockage of the electric signals.

Because your heat problems can be attributable to MS as well as many other problems your diagnosis actually is narrowed a bit. One of the difficulties in diagnosing MS is the symptom overlap. That said, however, your heat intolerance would help narrow the 400 disease/disorder possibilities. Make sure that heat intolerance is made known to the neurologist.
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Old 07-10-2012, 06:56 PM   #5
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Re: What is it about heat?

Elmbabies,
I too have unbelievable heat intolerance. I didnt know that I had it until I was diagnosed and the doctor and nurse started asking the "right" questions. One of them was about heat and how it affects me.

The summer before I was dx, I used to get out of a warm shower and start to blow dry my hair. Id be sitting on the bathroom rug with sweat running down my neck and back, in tears. Id be dizzy, confused, and generally just upset. My husband would find me in a puddle of my own sweat and think I was coming down with the flu or something. I would jump BACK into the shower and take a cold one and almost instantly feel better. That summer, I cut 7 inches off my hair to stop having to blow dry it for an hour.

That fall, I found out I had MS. Seven years later, I am still intolerable of heat, but I can live naked in the snow and not feel cold. (thats a distinct possiblity if this heat doesnt break soon~ Im putting in a transfer for Alaska! ) I live in a high humidity and as soon as it starts rising and the temperatures go up, I become miserable in attitude and health. I find that Im short tempered, short on rational thinking, and basically just miserable. In a perfect world, Id work in an airconditioned office, but Im in sales and Im in and out of my airconditioned car and into the heat, then into my accounts, then back out into the heat, and into a 110 degree car! I spend my day ultimately fighting heat stroke, MS issues and trying to regulate my body temp. I do wear cooling hats when Im not working, things I can soak in ice water and keep my head cool- that helps. I also try to wear layers because I can go from sweating to shaking rather quickly...even though when its consistently cold, Im fine. It appears to be the radical change in temps that brings this on...

You are not alone. Im sorry you are experiencing this...but welcome to the wonderful and often confusing world of MS. I really hope you find out you dont have it.

Nikki
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Old 07-10-2012, 07:30 PM   #6
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Re: What is it about heat?

Thank you for your kind words Nikki. I'm sorry your job requires such uncomfortable situations for you. Especially because it sounds like you may be dealing with the same heat we are.
I am just a stay at home mom but I would love to go outside and play with my children. I have always been one to go outside and play with all of the children but haven't been able to be that person since having my own. I also hope I don't have it. I know it's not the end of the world if I do but I'm still holding out hope that I just have some kind of vitamin deficiency or something they are missing. I've never had anything wrong with me that wasn't easily explained, and fixed.

MSJayhawk- The nervous system is so complicated. I was a nurse in my former, pre-mommy life. I passed nursing school with flying colors yet that was one system that completely baffled me. Guess that's why neurologists make the big bucks and take 3 months to get an appt I will leave all the conclusions up to them. I am just trying to collect as much information as I can. And I will mention the heat intolerance for sure, I've never been asked about it. See that's why I come here. You have no idea how much you've helped.

 
Old 07-11-2012, 03:01 AM   #7
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Re: What is it about heat?

Elmbabies,
Remain positive. You have a good outlook on this and thats going to get you far! Remember, that heat intolerance is a symtom which affects millions of people, and not just MSers...its not a definitive reason to think you have MS.

If you can handle raising 3 children, you can survive anything! Being a mommy is first and foremost the most important thing you will ever do; having MS, if you do, will not be the end for you! Youll learn to adjust like the rest of us have, and once you know what youre dealing with, youll be able to find a game plan which works for you! Stay focused on what you do have and the rest will fall into place.

Hugs,
Nikki
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Old 07-11-2012, 03:26 AM   #8
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Re: What is it about heat?

Heat intolerance can be felt by many people with autoimmune disorders. I have lupus and I am very heat intolerant. I think it has to do with the vascular irritability and tendency for the blood vessels to constrict and dilate more easily, brought on by heat or cold. This can be exaccerbated by involuntary nervous system instability as well. You mentioned the red face when outside. This is an example. If all your tests for MS are negative, as I hope they are, consider getting checked for other autoimmune disorders, as symptoms often overlap.

 
Old 07-11-2012, 05:10 AM   #9
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Re: What is it about heat?

Ladybud, I do actually have an appt with a rheumatologist before my neurologist appt. My doctor was first suspecting arthritis or something autoimmune. Initial bloodwork came back ok so he referred me and told me to tell him every new symptom. I went back again and I think the problems I am having with my eyes is what led him to want me checked for MS.

Nikki- I am definitely trying to hold out any of my own opinions of what I have. Just trying to collect information, not dx myself. I don't know that I would have thought to mention how miserable I get in the heat if I hadn't started researching. I never mentioned my eye troubles to my doctor until he asked. And I am trying to stay positive. I don't want it to be a big deal. Would LOVE to figure out what is wrong. Because I KNOW something is. I want to know the best way to take care of myself so that maybe I have less days of having to drag around my left leg. Or making a grocery list on a computer because I can't hold a pen. Or feeling like there is NEVER enough sleep. Not things I am used to and not good traits for a mommy of three babies!

I appreciate all of the helpful information everyone is willing to share. I'm so glad I came here even if I end up not having MS. Oh, and coming here and actually opening up, another thing I am not used to.

 
Old 07-11-2012, 10:09 AM   #10
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Re: What is it about heat?

Elmbabies,
Im glad you found us too. Sometimes opening up, virtually, and confidentially, is the best way to honestly share your fears and ask questions. Thats why we are here, to give a safe place to vent and ask questions, and meet others who are going through with what you are going through so that you dont have to feel alone.

When I first was dx, this board literally saved my sanity. I had no one to talk to, no one to confide in and no where to ask qustions. My MS nurse began to stop returning my calls I had so many the first few weeks! There were people here that really were wonderful. I swore then, that I would do the same for others someday. So, whether you have MS or not, we are glad you found us and will hopefully be able to celebrate the good news if you dont have this disease, or at least remind you that we too, have survived the initial shock of hearing the awful words "you have MS'. Either way, you have already demonstrated that you are capable of handing this and anything else that comes your way, so remind yourself that you are strong~ and not alone!

Hugs,
Nikki
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Old 07-11-2012, 10:22 AM   #11
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Re: What is it about heat?

Quote:
Originally Posted by Elmbabies3 View Post
See that's why I come here. You have no idea how much you've helped.
I am glad you could find some information which was beneficial to you. Not everything we have experienced will fit with what you are going through, but our uniqueness is that variable. Still, opening up and talking about it helps to lower stress levels and provides you with a wealth of information. Stay cool and stay strong!
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