“I learn something from this blog every time I do a survey. I knew heat sensitivity was a problem, but not such a problem. This is something that needs more research and a treatment to help MSers overcome the effect of heat, or cold, sensitivity.”
Poll results: heat sensitivity
Thanks for this, its good you're finding out but its a blow that no-one else had done yet. It is a massive issue for me in the summer and clearly many others.
I think that humidity plays a big part, too. Ie Dry heat isn't so bad, in fact I find it can be ok/helpful, but add humidity and things are more difficult – but this is true for people in general, isn't it? Also, cold has some negative effect and by that I specifically mean thighs which become much stiffer and more difficult to move. Maybe we should think of MS as the Goldilocks disease, in that to operate best, the temperature needs to be 'just right' 🙂
Humidity impacts on your body's ability to lose heat; i.e. it reduces the rate at which you can perspire (human) or sweat (animal), which is one of the most brilliant cooling systems ever invented. If you are interested in evolutionary medicine you should read about the evolution of the sweat gland and how that with the loss of body hair or fur gave man the advantage over all the other animals in terms of survival of the fittest.
Yes the human body is amazing and it's easy to overlook all the things that are still working properly, and not focus entirely on what's going wrong (ie MS). Very interesting – funny how nowadays we try to influence the mechanism using anti perspirants etc.
I describe the phenomenon of having a narrow band of optimal temperature for me to have the least symptoms as the Goldilocks effect – too hot and I feel fatigued, have cog fog and am more likely to have tremors and twiches. When it's too cold my muscles (especially legs) seize up, walking is very difficult and I got long-lasting spasms.
I have done a new post in heat sensitivity to explain how it works and to highlight the potential it has to protect nerves.
This year my daughter had very little disease activity and I feel that may be why she tolerated the heat better than in earlier years. I don't know if this is generally true
True, same with me – less disease activity more tolerant to heat.
The problem with heat is that you stay indoors to combat it hence even less UV exposure. Also, this heat intolerance shows itself very much at the beginning of the disease where people could maybe help themselves by being actually exposed to the sun rays. Heat intolerance also impacts on physical fitness – since if you always sit indoors your muscles weaken which further exarcerbates MS-related disability. It's a vicious circle really.
warm weather in the summer leaves me house bound for ages till it cools down again. think i'llmove to the north of sweden or something.
I don't really have problems with heat (grew up in desert, have lived recently in >50°C without aircon so quite used to very hight temps… Usually my body's response is no different than someone without MS). Humidity kills me though, digs up all the dizziness nausea lack of coordination etc. What I do notice though is I am much less able to tolerate cold, and even a bit of cold weather throws my coordination off, along with motor function in one hand and balance. I sleep with winter blankets if house is air conditioned. Wasnt like this before the MS of even in the beginning.Is this inability to tolerate cold (as opposed to heat) common in MS?
I suspect your thermoregulation, or sweat system, works well in dry heat, but not in humid heat. In the latter your core temperature goes up and you get symptoms. The cooling thing is new to me and many people have commented on it. It is either because you dress up to warm and your temperature goes up or the axons are cold sensitive. Cold does block conduction, but typically only at very low temperatures. I will need to look into this.
Maybe axons. Definitely not from dressing warmly. Symptoms esp motor function in previously affected areas get worse when it's cold; return to "normal" when I layer or wrap up. Never have problems when I dress warmly. What strikes me is that I am less able to tolerate temperatures that others consider "warm" (i.e. They sit with fans/air con and I am happy wrapped up in winter blankets). Or they are still in Tshirts and I'm in a sweater! Definitely less tolerant to cooler/cold temps.
Would be interesting to know how people notice their sensitivity to temperature? Is it an all over sensitivty or is it something like Erythromelalgia, which causes pain in the feet and hands? Dr. G, the relationship (if there is one) between Erythromelalgia and MS would be an interesting topic. I've read where there are some papers on it (being a secondary symptom), but didn't find anything when searching the site.
Re: "Erythromelalgia and MS"Dr Mark Baker in our group works on erythromelalgia and MS; they do have something in common the sodium channel. We are trying to develop better sodium channel blockers; there is good evidence that they are neuroprotective.
"Would be interesting to know how people notice their sensitivity to temperature?"Only in cold temps (cold to me, not so cold to others): – brain fog – problems with coordination & balance (hands esp.)- some tremor activity (not shivering… more like intention tremor, which I've had long ago but resolved)- increased pain (intensity & location), esp. in hands, more so in feet… ironically pain gets worse transiently as they warm (eg. shower,, warm water, put them near heater, etc) – muscle spasms
Dr G., Thanks for your response. Keep us posted on any breakthrough in this area. Appreciate the work you and Mouse Dr. do on the site!Anon 6:03… From what I have read here, it seems that people with MS may have a different perspective on what heat (or temp) sensitivity means and how they experience it (see the comment below as a perfect example) This is why I asked my question. Anecdotally, I have a colleague who actually wears a cooling suit and experiences cog fog when the temperature gets too warm, and I know others who have pain & sesitivity almost exclusively in the hands or feet. I was interested to know if the orign and/or treatments would be potentially the same or different.
I think that I have read somewhere that MSers don't sweat ( eg wet underarms). I have noted that since I have become aware of this, I don't seem to. Having just survived a 38 degree celcius day without seemingly sweating I am wondering if this is correct. If so, it would explain why heat is such a problem if there are no thermoregulatory effects of sweat. Is autonomic dysfunction behind this?
Yes, some MSers have autonomic dysfunction and cannot sweat. This can be from spinal cord, brain stem or hypothalamic dysfunction. One of patients developed central hypothermia that recovered. This was due to a lesion in the hypothalamus. Autonomic dysfunction is quite rare in MSers so it is not enough to explain the heat sensitivity issue.
Andy Clarke saidI would like your thoughts on the link below Prof G, he seems to be saying Autonomic Dysfunction is more prevalent in MSers ? unless I'm reading it wrong.Link Removed as it appears to links to a health centre
Try this one, I'm still getting my head around the fact Prof G was so surprised at the impact of heat on MS symptoms.Autonomic Dysfunction is quite rare ?http://msj.sagepub.com/content/7/5/327.abstractRegards as always
More bedtime readinghttp://www.ccjm.org/content/78/Suppl_1/S69.fullMS is classically a disease of white matter, although it can also affect gray matter. Autonomic dysfunction is common, affecting as many as 50% of MS patients with symptoms that include orthostatic dizziness, bladder disturbances, temperature instability, gastrointestinal disturbances, and sweating.Regards as Always.
I'll let Prof G answer this, you dig your own hole and either get out of it or dig deeperHowever, I do not think it is can also affect grey matter…I think now we should be saying it does affect grey matter.
I'll keep digging MD you can rely on that and whilst I may not be able compete on a intellectual playing field, I can certainly bring a 'coalface' mentality to the blog, btw the line 'Autonomic dysfunction is common within MS patients' was a copy and paste from the study.
Regards as always.
there has been some research on impaired sweating in MS as compared to controls, attributed to autonomic nervous system dysfunction. If sweating is impaired, it could lead to a higher core temperature, exacerabating the impairment of the demyelinated neurons.Pilocarpine-induced sweat gland function in individuals with multiple sclerosisScott L. Davis1, Thad E. Wilson2, Jamie M. Vener1, Craig G. Crandall3,4, Jack H. Petajan5, and Andrea T. White1http://www.jappl.org/content/98/5/1740.shortSympathetic skin response (SSR) is abnormal in multiple sclerosisB. Elie MD1, J. P. Loubo'Jtin MD2,*http://onlinelibrary.wiley.com/doi/10.1002/mus.880180206/abstract"the function of the autonomic nervous system is often compromised in multiple sclerosis"
Hi there! Do you regularly exploit online social websites?
Like some of the others, I have more trouble with cold than heat. I always seem to be colder than everyone around me, bundling up when others are in t-shirts. I feel cold from the inside out. I actually find that I feel better (more limber and awake) after a warm shower and often find myself turning up the hot water. I did not use to be this way. I remember one instance (after I had MS, but before I was diagnosed) where there was a discussion about whether or not to leave a window open on a cool day and I was in favor of the invigorating cold air. No more. I also suffer from cold hands, feet and calves.
Eidelman, in a chapter in "Multiple Sclerosis: Diagnosis, Medical Management, and Rehabilitation" (http://books.google.com/books?id=iUt_BdDDBHoC), argues that autonomic problems are underappreciated in MS because they are often "insidious and subtle in nature." There's only so much time during neuro appointments. Exams and history taking are focused on the grosser symptoms of MS (motor, vision, sensory, etc.) and thus tend not to pick up on ANS problems.
I also am finding that my hands are always cold… Well much colder than they should be at any given environment. I have had MS for just over 10yrs and this intolerance to cold was never a problem before the last few yrs. Heat, even extreme (dry) heat is ok. But just slight cold and I have problems. DBH