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Heat didn't really bother me much until the last few months. I actually went to DisneyWorld during the fourth of July last year with near 100 degree heat and was no more miserable than everybody else. but now it totally drains me. I wasn't really experiencing muscle weakness last summer but now that I am it is horrible.

I have had spasticity and sensory problems mostly in the past and heat actually made me feel better....but now with the weakness it makes it much worse. I had frequently used the heated seats in my van...it made the tightness in my back better and relieved the "submerged in ice water" sensory problems I had. But now...with the heat directly on my spine within minutes my leg that is weak worsens dramatically.

So I guess I am an example of 2 thoughts above...the longer you have it and the more progression the more likely you are to be heat sensitive..and...the heat directly to the spine area is bad news.

Wendy

Wendy-- welcome to the site

HI Wendy! Here's something I noticed about the heat issue just in casual conversation : People who use heating pads or electric blankets seem to have progressed more (Hey n=4.... this just an observation of friends) or simply are more progressed. Sometimes I can't sleep for the cold in my legs and feet and these folks talk about the same symptom. A heating pad for a little bit is a great relief. I'm fairly progressed myself at 5.5 or so EDSS.
Anyone else?
Marie

mrhodes40 wrote:Sometimes I can't sleep for the cold in my legs and feet and these folks talk about the same symptom. A heating pad for a little bit is a great relief.

I use a small microwaveable heating pack called a Bed Buddy for my neck when I get bad muscle cramps. These also work great for cold feet and you don't have to worry about any fire hazards or leaving them on too long since they're not plugged in. They only need to be microwaved for 1.5-2 minutes to get them hot depending on the power of your microwave.

NHE

Great I'll get one. Thanks!
marie

NHE--your book recommendations have been terrific! So, based on your recommendation, I got a Bed Buddy today. I had to do something about my icy feet and legs (from the knees down!) at bedtime! A safer solution than the heating pad. Thanks.

Niko, Heat AND Humidity definitely effects me more too.

I haven't done any research, but I seem to recall something about potassium channels being affected by the "walking" drug based on 4-AP/rat poison etc. If so, might it not also affect heat intolerance? I don't know the trade name because it's not prescribed for "progressive" MS. I just came back from a trike ride. The air was hot, even at 6PM, but I was OK with my coolers. First I had to extract trike from back of van under wheeless 2-wheeler. Did about 6km.

BTW I don't like the term "heat intolerance". Heat can shut you down completely.

Hi,

Sounds like a definite correlation between fatigue and heat.

I've had MS diagnosed since the very early 1990s and had more trouble with heat then than I do now. Time does not equal progression as I don't struggle now but I have had big attacks (just to confuse the issue). Progression of what is the question.

Baclofen is a potassium channel blocker. By slowing the exit of potassium from the cell, Sodium entry is slowed. It is the influx of Sodium that triggers the release of calcium from the sarcoplasmic reticulum that triggers muscles to contract. If heat blocks the potassium channel then it should be positive not negative for muscle spasticity. Yet the opposite seems to be a common issue.

Why then, am I different? There oodles of proof of my MS but my path is different. Fatigue was a nightmare for me years ago but it isn't now. If there is a correlation between heat and fatigue then my response is still consistent, as is yours.

Regards

Just as an FYI - this is a thread from May 2006, just bumped up recently. Although old threads very often hold much useful information and are worth an additional review and update, heads up to those who want to reply to a question that might have been asked 9 years ago...

P. S. Just to show our individuality, heat has very little effect on me -- not more than anyone else my age. And my docs consider that mine is one of the most definite cases of MS they've seen.

How are you on fatigue issues?

Regards

Scott1 wrote:How are you on fatigue issues?

Regards

Hi Scott, if you're asking me this question, fatigue isn't a problem with me either. I've very likely had MS for 40+ years -- maybe even since childhood -- although I was only diagnosed in 2003 at age 52.

As for heat: The interesting thing is, throughout all that time (until I was 50), I never had air conditioning in my house, and only occasionally in my cars. I just muddled through 80-90-100 degree summers and somehow managed to work in the yard, cook in a 90 degree kitchen, etc., with occasional weird episodes (not necessarily during the hot weather).

Fatigue: Many years ago, it finally dawned on me how stupid I was to stay up late and try to get by on 5-6 hours sleep, dragging myself through the next day. Once I started to go to bed early enough to get an average of 8 hours sleep/night it made a miraculous change in my life. Sleep cures my general fatigue, and when I started exercising every morning it boosted my energy & mood. Once I started eating an extremely healthy diet along with it, I was a new person. For many years.

Then...I got a surprise, accidental diagnosis of MS -- while feeling GREAT. Currently I have all kinds of medical problems -- but from age and NOT from MS at all.

Then...I got a surprise, accidental diagnosis of MS -- while feeling GREAT.

How in the world did that happen? Do you have lesions, black holes, oligoclonal bands? My father had peripheral neuropathy, but not MS. From type II diabetes.

About baclofen: it is the only drug that affects my restless legs. Localized applied heat brings on my restless legs, even when the other heat problems are absent.

Many years ago, it finally dawned on me how stupid I was to stay up late and try to get by on 5-6 hours sleep, dragging myself through the next day. Once I started to go to bed early enough to get an average of 8 hours sleep/night it made a miraculous change in my life. Sleep cures my general fatigue

In light of recent discoveries regarding CSF/glymph flushing of brain during REM sleep this is not surprising. I suspect lack of sleep will bring on and worsen MS (as is now suspected with Alzheimers). It may even be a primary cause, for all we know.

Scott1 wrote:Hi,

Sounds like a definite correlation between fatigue and heat.

I've had MS diagnosed since the very early 1990s and had more trouble with heat then than I do now. Time does not equal progression as I don't struggle now but I have had big attacks (just to confuse the issue). Progression of what is the question.

Baclofen is a potassium channel blocker. By slowing the exit of potassium from the cell, Sodium entry is slowed. It is the influx of Sodium that triggers the release of calcium from the sarcoplasmic reticulum that triggers muscles to contract. If heat blocks the potassium channel then it should be positive not negative for muscle spasticity. Yet the opposite seems to be a common issue.

Why then, am I different? There oodles of proof of my MS but my path is different. Fatigue was a nightmare for me years ago but it isn't now. If there is a correlation between heat and fatigue then my response is still consistent, as is yours.

Regards

Hi Scott,

As we know, MS consist of two different mechanisms. The big flares are not the same as the progression. We know why. See e.g. the thesis MS UNRAVELLED of 10 Aug on http://www.thisisms.com/forum/general-d ... 8-720.html

I think the heat effect is particularly pronounced in patients who are progressive. Myself including. It gets worse every year.

The explanation is the ion pump that has ever more difficulty to maintain the equilibrium (of charging on the outside of the cell). If this charging runs down, fatique will be worse, motor functions will detoriate.

In my view the charging of the ion pump is maintained by the mitochondria. These are the main energy producing source in the cell. I think in nerve cells, the mitochiondria must be aligned in some way. And when the charged particle inside the mitochondria is exchanged to form H2O, the CA, K, NA ions must be dragged along the membrane on the other side. I am an electrical engineer, and electrically, this is the only way it can work.

If the health of the mitochondria runs down, the heat effect - a natural protective mechanism of the cells - will become more pronounced. If it gets colder, the mitochondria will work faster. And the pump changes better.

Lots to think about. Not just for us, but also for the professional sector.

Leo