heat

Question

.if they use to test for ms in hot tubs 30  40 years ago and they stopped  because it brought on relapse why arnt we told note to have any thing  that is heat related exercise, stress, sun ,labor almost any thing.

supermum_ms · Accepted Answer

As I pointed out CCSVI has been widely disproved, and heat doesn't have anything to do with progression. You are assuming the monkey was actually alive and under stress, therefore increasing it's body temperature etc and that humans undergoing testing for CCSVI would not be stressed, emotional charged ie anxiety, fear, excitement etc with raised body temp. Your also assuming that MRI's do not cause any rise in body temp and that people who live in the coldest climates do not get MS or if they did, their MS would be less disabling due to temperatures but the colder the climate the higher the MS incident rate is.

If you are basing your idea on a bit of information you've gathered after reading the websites and blogs, that support CCSVI (now myth not fact), and whilst everyone has the right to free speech, these sites are often utilised by big pharm conspiracy theorists, and tend to use anecdotal tails as proof of their position, spread misinformation and are short on factual information, double blind studies that don't support their theory and years of medical research by greater minds of the international science world. 

True dymelinated neuro pathways and or damage to the central nervous system, will never be the same after the damage is already done but wheelchair or not, heat and swelling is unrelated to MS and goes back to your vascular idea, which doesn't take into account the hundreds or thousands of MSers who live in colder climates, have no heat intolerance, the monkey brain dissected, double blind CCSVI research etc etc 

I humbly suggest you discontinue this thought process and move on.....

Cheers.....JJ

Merlinco · Answer

PS: I have had an initial flurry of questions, about 6 or 7 posts in total, the bulk of which are in my thread.

I'll just read the responses now.  Ta.  :)

Merlinco · Answer

Well, I joined this community because it seemed to have some logical and well informed posters. Your post and supermum's above are two examples, and was actually the conclusion I had reached. However I am still confused, because even in the posts of this community and elsewhere there is sometimes generalization and conflict.

essdipity · Answer

Hi there. Some of your questions in various posts here tell me that you have some incorrect ideas about MS. 

MS is a disease of the central nervous system, which covers a lot of territory. The only thing that all MSers have in common is lesions in that territory that disrupt or distort normal functioning. Everything depends on location of lesions. Although most MSers will experience a worsening of some functions (not the same functions, necessarily) when overheated, not all will. Some people apparently have good enough function in non-demyelinated nerves so as to compensate for the 'bad' ones very well, and thus the heat effect doesn't apply for them. Or perhaps the slowing of nerve conduction caused by heat is more or less beside the point for some, if what they are trying to do does not involve their demyelinated nerves.

Along the same lines, eye problems occur only when the optic nerve(s) are affected by MS. This is common, but by no means is it everyone.

As we say on this forum nearly every day, everyone's MS is different. When you've met one person with MS, you've met one person with MS. Almost no sweeping generalizations apply.

ess

Merlinco · Answer

Is it correct what I have read that heat does not affect all MS sufferers?  Likewise eye problems are not always present?

If heat was so damaging why would the few professional athletes with MS continue to excel at what they do?  Why would Kayla keep running?

supermum_ms · Answer

Hey Billy welcome back, since it's been almost a year since we talked about this, my little pee brain got soooooooo confused....... (:D

I'm not sure if you are aware or not, but vit D research is getting a lot of headlines, it's being associated with just about everything but nothings so far, (as far as i'm aware) is getting to the nitty gritty of exactly what if any, roll it plays with all these different medical conditions. 

The problem i often have with the controversial idealisations and theories that keep circulating, is that they never cover the exceptions, twin studies etc I'm not saying vit D isn't relevant to the health of human body but it's no different in my mind, to the viral trigger concepts. eg Mono is actually so common in the general population, the idea doesn't cover many of the exceptions, like why a small proportion would go on to develop MS and the majority don't, why would one twin develop MS after having mono and the other one didn't etc etc etc. 

I have similar thoughts regarding vit D, in Australia for example, the estimation of vit D deficientcy is 1 in 3 which adds up to being millions of Ozzies being vit D deficient. Which on it's own defies the validity of vit D playing an integral roll in the development of MS, because we do not have anywhere near those kind of numbers of diagnosed MSers........why is it so?

The human mind is a wondrous thing, science is at odds at explaining why what we believe in can prolong life and yet without any scientific basis, people can live or function beyond medical expectations or common design.......and the very opposite is also generally true!

Cheers...........JJ

billy441 · Answer

am not ageing with the drainage in the ccsvi am talking about the flow of vt d in the monkey brains where they did autopsy and proved this am just saying they should look more into this at the start and follow through the stages of ms due to the way vt d plays a role, they say  in the colder calamites its the lack of vt d not the heat. i think most lesion to body's and slow down I didn't am in a chair now not due to stress just taking to esteem's.

billy441 · Answer

I was talking a bout when stress was used in monkeys brains they found  the vt d in autopsy's  was closing veins of where the vt d is so pot to go, so what am saying its not  the drainage in the ccsvi its the flow .looking at all the ms and vt d ,vt d plays a big role with ms, even  in the young, common  since heat swells where most lesion to body and slow down I didn't and I am in wheel chair now where I know it wasn't from stress more from over doing it, for example I had a hard time going to a basement after getting there I saw where people I hired they ruin a 5'000 dollar. I did  water proofing job I had just install I went down to where I could only talk I mean nothing would move fingers and all,  I didn't know I had a fever at the time to I did think it was over. note am pp not rr. i never would have thought weighting 130 pounds how hard it was carry me out from two big guys till i brought fever down I just think they should look into and follow through the stages of ms

billy441 · Answer

all I was saying it starts the ms and continues it, thanks

Sailorsong · Answer

The one thing that you are missing in your thinking is that heat produces swelling and therefore the symptoms of MS getting worse. This is not the case with MS. The heat doesn't cause swelling, what it does is disrupt the signals in the nerves of a person. 

A good way to think of this is that your nerves are like electrical wires in that they both transmit electrical energy. Surrounding the nerves is Mylin just as electrical wire is surrounded by insulation.  With MS the immune system damages this insulation.  A result of this damage is that getting over heated will cause the mylin to leak more of the electrical energy instead of sending it along the nerves which causes the symptoms. The same thing will happen to an electrical wire with damaged insulation. The electrical energy the wire is suppose to carry will leak out to the nearest conductive surface instead of continuing down the wire. 

Dennis

billy441 · Answer

this well be the last, I thought this could be a simple thing to try but if you can find one study of the research doing mri s and ultrasounds of veins While  some one is at the start of ms and during progression let me no.I did have one chances to go to litton bionects to feed all the test animals and believe me  its not what you would like to see. and for people up north it could be as simple as the way they dress for the cold I have learn that when I dress for cold I have to undress coat, sweet shirt according to what am doing  it dose same thing as any heat tolerance dose .thanks

billy441 · Answer

I am thinking this way because; every body's heat tolerances is different every body's symptoms are different and all these drugs are trying after the fact to treat,thats 14 billion a year and all the research has us thinking that way. I've  read  some on the  uhthoffs phenomerfon there's a lot on inclusion they didn't have the hi tec machines and they made that the law. Bills terry is dose it start with heat tolerances and swells in different areas in brain to clause  different problems. every body's day life is different witch could be played out in the progression. In the ccsvi  trials they do an mri an ultra sound of deep cerebral veins and neck to see where they should stent that's  being normal temp What if that was done under heat stress form on set. I am   looking for what I read on  earlier test on the monkey  brains where they proved that vit d was not going where it was suppose to,  was that monkey under stress I can imagine he was.am not trying to change science just look into. The wheel chair thing is it possible that in time with out  the heat tolerances that swelling  reduced to the point and with other damage done  the melamine wont ever be the same. damage already been done

supermum_ms · Answer

I'm not sure why your thinking this way, there maybe a bit of a misunderstanding regarding heat and where MS research has moved onto. Much has changed in the last 30+ years, not only in diagnosing MS but in disease modifying drugs, symptom medications, research etc. 

CCSVI has been thoroughly researched and not one double blind study has been able to match or even produce anything remotely similar to the, just shy of %100 perfect results that Dr. Paolo Zamboni produced - the CCSVI theory has been disproved. There are many articles about the CCSVI theory no longer being valid but this one is a pretty easy read...

http://www.sciencebasedmedicine.org/the-end-for-ccsvi/

Q) "why  is it most confined to wheel chair can  sometimes walk again is it do to not trying to walk."

A) ahhhhh that's a little.....um....reminiscent of how none MSers typically think, about someone who isn't 'permanently' in a wheelchair and the thought is simply from a lack of understanding on how MS can effect people. 

Off the bat.... when a person with MS is temporarily or intermittently using a wheelchair, it has absolutely nothing to do with "not trying to walk"! 

There are multiple reasons for why a person with MS would be using a wheelchair ie vertigo, visual issues eg double vision, fatigue, conserving energy, muscle weakness, tremor, spasms, spasticity, pain, numbness, sustained clonus etc etc etc   

Hope that helps clear up some things :o)

Cheers.......JJ

billy441 · Answer

Thank you all for you comments.  I appreciate them.

billy441 · Answer

I think what am trying to say is every body's heat tollance is different what brings it on is different they say a trimetric injuries most women stress job stress, marriage, hot showers, labor you name it. am a believer in  paolo kamboni  ccsvi  terry but in us and Canada there not doing any heat related symptoms to see what is swelling I realize I only have a 10th grade ed but heat swells witch could be cutting blood supply or return 30 years ago they know in monkey brains low vit d stops the flow of something in the brain and that's one of the reasons they push vit d no where  can I find a test or trail using something before and after razing body temp at onset and progressing ya I did find one for quality of life and on med help on heat and fatigue  I have asked my doc  to have me do it she said insurance wouldn't pay and would  over $40;000.00 doing a couple in time but it seems to me it would be a good start. Talking wheel chair am at a point one step is to much I have done  all that could be done scoter railings etc. years ago when I whet to physical therapy I thought riding the bicycle is what I needed, and believe me I tried it put me in bed two days after  and why  is it most confined to wheel chair can  sometimes walk again is it do to not trying to walk.

supermum_ms · Answer

I'm sorry Billy, I actually found your post a little bit difficult to understand, but i'll do my best.... 

Q)"I hear what your saying,how  is that community member doing now?"
A) I'm not exactly sure, its been a few years since she stopped posting but from what i can remember, she was very excited to have finally been able to walk, though she was still needing ability aides. It was definitely a big improvement and it took a long time to recover but the community was just as excited for her!

"am not saying that it puts you right into ppms  what I am saying it makes ppms come qiker" 

I don't believe that idea is correct, RRMS can convert into SPMS but that has nothing to do with heat exposure or physical activity, that's basically to do with the amount of time (years) a person has had MS for. PPMS on the other hand is one of the rarer forms of MS and it is a very slow progression of disability, and as far as I know nothing makes PPMS quicker. 

Q) "I don't think there's a doc out there that  would say don't exercise but when you exercises  is it 10 min or 1 hr or do you try to take it to the mackes"

A) The amount of exercise or activity a person with MS is capable of doing, would have to be determined by their individual level of function. Personally i'm always at war with what I want to do and what i'm capable of doing, taking it to the max is what my athletic mindset wants but my reality will not buy into that idea. 

I'm confused how you could know for sure, that you actually only weeks or months away from being in a wheelchair, which I gather you're meaning permanently. From what I understand you're saying, your trying to run a farm with a work-alcoholic mindset but unless you are making accommodations for your MS and resulting physical limitations. You could just as easily be pushing your self everyday, way beyond reasonable boundaries for an MSer to do and experiencing daily psuedo's because of it. Are you pushing beyond your limits?

Q) "i hate to go on but find one test where they look at a  befor being normal like we all do and an after using heat  in mri s  and ultrasound of neck and brains veins ,how will they know were to start."

A) I have no idea what you mean, sorry!

Cheers........JJ

PS hope that made sense :D

billy441 · Answer

I hear what your saying,how  is that community member doing now? and am not saying that it puts you right into ppms  what I am saying it makes ppms come qiker  my doc tills me  listen to body and when you don't or cant whats it doing in the long run I have crawled back to ac a lot more then I should have and still getting worse,and I don't think there's a doc out there that  would say don't exercise but when you exercises  is it 10 min or 1 hr or do you try to take it to the mackes  I had set up a farm so when I retired I would keep busy and did and still so I would not just sit around I only had foot  drop when retirerd 6 years later am weeks or months away form wheel chair ppms note I was a work aholec and still try I do have a cooling  vest, when you have a heat  exposure use a dish towl see how hot t gets even excesses,i hate to go on but find one test where they look at a  befor being normal like we all do and an after using heat  in mri s  and ultrasound of neck and brains veins ,how will they know were to start.

supermum_ms · Answer

Hi Billy, 

Most MS literature describes and explains all the issues of over heating, statistics put heat sensitivity (which is called Uhthoff's phenomenon) at around 60% and i'd expect neurologists would be mentioning this at some stage with their MS patients. 

It's unrealistic to not do anything that causes your internal temperature to rise, we need to keep fit, physiotherapy, bath, get Vitamin D from the sun, maintain our homes etc. It's possibly one of the important issues MSers need to understand, if and how their sx's exacerbate, when they are effected by heat and what they can to do to minimise it's impact on their everyday, can make a huge difference with their quality of life and that's not small thing. 

Whilst it's true Uhthoff's phenomenon typically causes a temporary worsening of sx's (Pseudo relapse), and the MSer will return back to their normal, once they've cooled down and rested. Depending on the heat exposure eg Hot tub, sauna etc, it can in some pwMS actually set off a genuine relapse and has the potential to cause disability, they stopped doing the hot bath test because of its potential to harm. 

A few years ago, we actually had a community member who spent time with friends in a Hot tub and unfortunately she lost the use of her legs, she did eventually recover to a point but it took a lot of work and appox 2 years to get out of her wheelchair. Heat can effect pwMS differently, some not at all, to a high percentage it's an everyday balancing act, and to some heat is a major problem, we are not all size fits all, so understanding how or if heat effects you, in my opinion is important to know.       

Personally, i've had heat exposure that has effected me for hours, and some times it's taken days to get back to my normal. I'm currently waiting for my speech, vision, balance etc to come back after clearing out a room to put new flooring down, and it was really hot weather, i absolutely know better! I'm cool and rested but i've not bounced back yet.........7 hours so far. 

Cheers...........JJ

PS keep living but be wise and live well :D

doublevision1 · Answer

In MS, heat brings on only a temporary worsening of symptoms, called a pseudo exacerbation. Symptoms improve once the body cools down. It is not a true relapse and doesn't cause the disease to progress any faster or more severely. Exercise is important for people with MS. I find that drinking ice water while I work out keeps me from overheating to the point of serious double vision, loss of balance, etc.