Can heat sensitivity be explained from CCSVI point of view?

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Can heat sensitivity be explained from CCSVI point of view?

Postby ndwannabe » Fri Apr 23, 2010 8:00 pm

Wouldn't the vessels expend with heat, therefor allowing more flow? Or would the heat sensitivity be due to inflammation?
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Postby zap » Fri Apr 23, 2010 8:30 pm

I think CCSVI explains the old "hot bath test" for MS and the heat fatigue much, much better than the autoimmune theory, which is explained this way:

The destruction of myelin, the protective sheath which surrounds and protects nerve fibres causes the formation of plaques on the nerves which slow nerve impulses. A build up of heat slows down nerve transmission causing symptoms to worsen.


http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1708

When I was having my first episode, I was asking my parents about familial tendencies to blood pressure problems, because when I took a hot bath I would get very messed up, and could feel the blood pounding in my hear and chest. It also flared back optic neuritis symptoms, balance trouble, etc ... the autoimmune theory about heat sensitive nerves shorting out never felt right to me - I was sure that I could FEEL that it was something relating to my circulation.

It seems that heat causes decreased cerebral perfusion pressure and decreased cerebral blood flow - which I suppose would make an already hypoxic situation worse,

a couple links to ponder:

Hot topic—cerebral hemodynamics in the heat:
http://jap.physiology.org/cgi/content/full/105/2/400


Heat stress reduces cerebral blood velocity and markedly impairs orthostatic tolerance:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2442822/
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Postby ndwannabe » Fri Apr 23, 2010 10:36 pm

Whoa, that is some serious explanation! Thank you for this!

Impressive.
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heat lover

Postby hwebb » Sat Apr 24, 2010 1:57 am

you know, I had bad heat sensitivity during and after my first major relapse. I was then diagnosed, and started taking medicine (copaxone) and made a major change to my diet (lotsa omega-3, ultra low saturated fat diet). I've had relapses since then...but have never felt heat sensitive again. I really think the omega-3 has has helped. They say it's incorporated into your cell membranes, and is a lot more flexible than saturated fats.

I would really recommend this approach to anyone. Eating omega-3 rich foods has no side effects, and potentially lots of benefits. Other benefits I've had aside from the heat tolerance is my skin is more elasatic (so softer, and better texture), and my tears are more viscous (so no more dry eye). Oh - and I lost 15 kg in the first 6 months.

Helen
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Re: heat lover

Postby sbr487 » Sat Apr 24, 2010 2:57 am

hwebb wrote:Other benefits I've had aside from the heat tolerance is my skin is more elasatic (so softer, and better texture), and my tears are more viscous (so no more dry eye). Oh - and I lost 15 kg in the first 6 months.
Helen


This is how I used to feel when I was normal. I am going to start with Walnuts (?)
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the regimen I've been following

Postby hwebb » Sat Apr 24, 2010 4:22 am

I've been following the recommendations of Dr George Jelinek. He has a book, and a website, devoted to overcoming MS. He has MS himself.

http://www.takingcontrolofmultiplesclerosis.com/

His recommendations are broken into two phases. The initial 9-12 months after diagnosis, Jelinek recommends taking 20mL of fish oil a day (capsules, or in actual oily fish...say ~ 100g of sardines). In the second phase (>9-12 months), he recommends actually eating oily fish 3 or 4 times a week, then on the other days taking around 20mL of flaxseed oil. The reason for this is that flaxseed oil contains less saturated fat than fish oil ...but still packs a big dose of Omega-3.

He does recommend consumption of saturated fat in natural foods...but only in limited quantity. So walnuts would be fine in moderation. Flaxseeds would b even better though (less saturated fat, more omega-3)

Anyway, I'm about 9 months into the diet. As I mentioned, I have a number of health benefits...though my relapse rate is not under control. I think I was accidentally consuming too much saturated fat in the first stage. was taking fish oil tablets, and eating oily fish as well. I should have been more careful about quantity of oil consumed. I will keep with the diet, as I feel so much better (apart fromt he regular relapses I've been suffering...I hope they occur less frequently too now I'm in "phase 2").

Helen
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Heat impact on MS

Postby MarkW » Sat Apr 24, 2010 7:59 am

Hello all,
I am going to be boring and point out that heat is not bad for everyone with MS. For some, humidity is more critical, others find cold unbearable.
The mechanism of the impact of hot/cold/humidity on MS is not understood. How can anyone explain what CCSVI could do to these symptoms of MS ??
The first evidence I will hope to read is the impact of de-stenosis on the BBB.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Heat impact on MS

Postby euphoniaa » Sat Apr 24, 2010 8:23 am

MarkW wrote:The mechanism of the impact of hot/cold/humidity on MS is not understood. How can anyone explain what CCSVI could do to these symptoms of MS ??


I agree. And...I don't have the slightest bit of information/opinion about the thread subject. :)

However, the main reason I'm posting here is to clarify some of the comments about omega 3s.

from hwebb

Eating omega-3 rich foods has no side effects, and potentially lots of benefits.


Actually, for those of us (like me) who have food allergies and sensitivities, any food also can be potentially dangerous. No matter how beneficial omega 3s are found to be in studies, my body's immediate reactions to most omega 3s have been worse than anything MS has ever done to me. That includes walnuts & fish oil, flaxseed oil is worse, and eating shellfish has sent me to the ER.

It's important to keep that in mind when trying things - especially supplements that give them to you in a concentrated form - and introduce them slowly.

Hope everyone finds their optimal diets and dosages! :)

P.S. I'm another MS person who doesn't have much sensitivity to heat. I'm on my way out to cut my grass in the sun right now. :)
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Heat impact on MS

Postby BELOU » Sat Apr 24, 2010 8:41 am

MarkW wrote:others find cold unbearable.


Funny statement, when I do alpine sking I have difficulty speaking. I thought that I was the only one having such problem with cold. Unfortunately, mean temperature here in eastern Canada is around -15°C during the winter. Glad to see that I'm not alone. I prefer to have problems with cold than heat.


Use the force!
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RR:2004 EDSS: 0 COPAXONE since 2009
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Postby cheerleader » Sat Apr 24, 2010 8:46 am

we've discussed this several times on the CCSVI boards.

Around 80% of MS patients are affected by heat-
A review of the literature indicates that up to 80% of multiple sclerosis (MS) patients report worsening of symptoms with elevated body temperature; there are also anecdo tal reports of amelioration or improvement in some signs and symptoms of MS with low ering of core temperature. This paper reviews the possible physiological basis for tem perature effects in multiple sclerosis and discusses clinical trial design issues for objective evaluation of the therapeutic use of cooling in the symptomatic management of MS, cooling. garments, and core temperature measurement.

http://nnr.sagepub.com/cgi/content/abstract/10/1/23

If there is venous congestion, the emissary veins that provide cooling to the head are unable to bring the core temp down- Here is a prior thread-

http://www.thisisms.com/ftopict-7540-em ... html+veins

Here is MRhodes explanation (she was our resident medical gal, 2nd treated at Stanford who is now back to work and too busy to post) I suggest searching her name as author sometime...she had the best medical explanations-

I got another interesting question in pm that boils down to:

Why are some people heat sensitive and some not?

Speculatively there are probably 2 different mechanisms in play.

1. The venous drainage and the fact the brain is cooled by the veins, and it appears in CCSVI that the venous drainage is slow, thus heat is not removed from the brain as it should be....and

2. The fact that demyelinated and damaged nerves function more poorly in heat. In fact all nerves transmit more sluggishly in heat my neuro told me, so the MSer with her demyelinated nerves has it that much harder.

For the person newly diagnosed early in the disease, you may not notice much heat sensitivity.

Others may notice it quite a bit if their venous stenosis is severe as the emissary veins cool the brain through the venous system, and a plugged venous system may result in a very hot brain in the heat. Such a person may recover hugely when circulation is restored and overnight may be vastly better.

For the person very progressed like me, probably a lot of the heat sensitivity is related to the fact that there is extensive nerve damage. Such a person may recover good venous flow but still feel weaker in the heat due to the simple fact their nerves transmit signals more poorly.

http://www.thisisms.com/ftopict-8390-em ... html+veins

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Heat does not mean increased body temp

Postby MarkW » Sat Apr 24, 2010 9:20 am

Hello Cheer,
As usual I am pedant, with regard to your quote:
A review of the literature indicates that up to 80% of multiple sclerosis (MS) patients report worsening of symptoms with elevated body temperature;
This does not mean:
Around 80% of MS patients are affected by heat-
Our bodies usually cool us down to maintain a steady temperature. This means that if the weather is warm our body temperature stays the same.
I have not seen research data on the impact of hot/cold/humidity on pwMS.
Personally I am best at 25°C (77°F) with low humidity, which is different from other pwMS. Another area of research after CCSVI !!
Kind regards,
MarkW

PS Omega 3 is already on TIMS, so no comment here.
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: heat lover

Postby ndwannabe » Sat Apr 24, 2010 2:36 pm

hwebb wrote:you know, I had bad heat sensitivity during and after my first major relapse. I was then diagnosed, and started taking medicine (copaxone) and made a major change to my diet (lotsa omega-3, ultra low saturated fat diet). I've had relapses since then...but have never felt heat sensitive again. I really think the omega-3 has has helped. They say it's incorporated into your cell membranes, and is a lot more flexible than saturated fats.

I would really recommend this approach to anyone. Eating omega-3 rich foods has no side effects, and potentially lots of benefits. Other benefits I've had aside from the heat tolerance is my skin is more elasatic (so softer, and better texture), and my tears are more viscous (so no more dry eye). Oh - and I lost 15 kg in the first 6 months.

Helen


I have been implementing tons of Omega-3 in my diet for oh, over two years. I eat fatty fish every day, flax seeds every day, fish oil supplement, vitamin D, vitamin E (the last one not necessarily have Omega-3, but also contribute to fluidity of the cell membrane).

Summer just hit bad here (bad for me that is) in Northern Cal and for the last two days I am dying here.

I also have no idea how you people actually lose weight :( With my lack of movement I've been gaining steadily despite my lean meat+fish+veggie diet.
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Postby ndwannabe » Sat Apr 24, 2010 2:39 pm

Thank you Cheer! Cooling down the brain idea makes sense.
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Heat sensitivity is a major for me..

Postby Jenb » Sat Apr 24, 2010 5:27 pm

Takes me about an hour to recover from my morning shower.... Haven't bathed or hot tubbed in years.

One of the major complications is that I hate the cold.. I have a terrible time recovering from a chill..dammed if you do and dammed if you don't kind of scenario.

I do notice that my frozen breakfast smootie seems to counter act the neuritis cloud that I get from the shower.

The other thing that helps with the cloudy vision is red wine.
Its great actually...I can weeble wobble, and slur along with "normal people" but I can seeeeee youuuuu... and I'm not freezing!

I 100% believe that I have a vascular problem and "MS" is a complication of my congenital disorder.

I am planning on proving it !
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Re: Heat sensitivity is a major for me..

Postby ndwannabe » Sat Apr 24, 2010 5:43 pm

Jenb wrote:Takes me about an hour to recover from my morning shower.... Haven't bathed or hot tubbed in years.

One of the major complications is that I hate the cold.. I have a terrible time recovering from a chill..dammed if you do and dammed if you don't kind of scenario.

I do notice that my frozen breakfast smootie seems to counter act the neuritis cloud that I get from the shower.

The other thing that helps with the cloudy vision is red wine.
Its great actually...I can weeble wobble, and slur along with "normal people" but I can seeeeee youuuuu... and I'm not freezing!

I 100% believe that I have a vascular problem and "MS" is a complication of my congenital disorder.

I am planning on proving it !


I'd add "Yeah that!" to all of the`above and red wine too! Except maybe for cold. I think I am starting to like cold :P
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