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I have had MS for over two decades. I've frequented forums on and off for the past 10 years. In all my reading, I have never seen this cold hands and feet complained of or listed as general and common symptoms of MS. Until CCSVI and the common occurrence of "liberated" patients feeling warmth suddenly in their hands and feet, that is. I can get that if you have suddenly increased blood flow, you might feel a surge of warmth in your extremities. But that's different than having chronically cold hands/feet to begin with. You can have increased warmth without having coldness to begin with.

Personally, I only developed cold hands and feet (mostly feet) in the past 6 months or so, I surmise due to lack of exercise and movement during this time and not from congenitally twisted veins.

So I wanted to put it out to the forum and ask: do YOU have cold hands and feet and do you relate it to your MS? If yes, how long has it gone on for (in terms of your MS history)?

I just want to get a sense whether cold hands and feet really are common complaints in MS and I somehow have missed noticing that in all my years of reading about MS and people with MS.

eric593 wrote:I have had MS for over two decades. I've frequented forums on and off for the past 10 years. In all my reading, I have never seen this cold hands and feet complained of or listed as general and common symptoms of MS. Until CCSVI and the common occurrence of "liberated" patients feeling warmth suddenly in their hands and feet, that is. I can get that if you have suddenly increased blood flow, you might feel a surge of warmth in your extremities. But that's different than having chronically cold hands/feet to begin with. You can have increased warmth without having coldness to begin with.

Personally, I only developed cold hands and feet (mostly feet) in the past 6 months or so, I surmise due to lack of exercise and movement during this time and not from congenitally twisted veins.

So I wanted to put it out to the forum and ask: do YOU have cold hands and feet and do you relate it to your MS? If yes, how long has it gone on for (in terms of your MS history)?

I just want to get a sense whether cold hands and feet really are common complaints in MS and I somehow have missed noticing that in all my years of reading about MS and people with MS.

Hi Eric, thank you for asking! No, I absolutely do NOT have cold hands/feet as a general symptom, and I don't recall ever hearing it listed as a complaint before now either.

I keep wanting to ask the same question as you. Even though I get Raynaud's now and then, it's an official side effect of my blood pressure med, occurs as little cold spots on otherwise warm hands & feet, and happens very seldom, lasting a few minutes or seconds at a time. I've almost eliminated it recently with a new BP med.

Another interesting note: I've been charting all my symptoms daily for 6 years, as well as weird incidents, reactions to food and supplements, etc., ever since I did an experiment with LDN. There are 35 columns or so, and 2 of them chart my body's problems that day in relation to "Cold" and to "Heat" so I've been very conscious of how they feel. My hands and feet have been fine, except in the winter after I've just come in from shoveling snow in 20 degrees.

I've seen whole threads speculating about other symptoms that might show CCSVI, and I don't have any of those either (red head, LOW blood pressure) - I don't even have unusual fatigue, although THAT one is an MS symptom, I know.

But CCSVI is way more complex than it first appeared - I'm eagerly awaiting the true discoveries that come in the research.
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Thanks euphoniaa,

I thought I was losing my mind that I seemed to have missed this symptom amongst my fellow MSer's all these years.

Me too, I can't wait for controlled research on this to see what really comes out in determining its place in the pathogenesis of MS. I hope it's something important to us, but we won't really know until we get some good researchers accumulating objective data on us. Hope for the best, but remain grounded and rational.

I have not had any problems with cold feet or hands either. Me myself do not belive I have any problems at all with body temperature, but all my freinds and family say that i have. I suppose somedays i wear a summerdresa and sandals in winter, not feeling cold, and other times I'm freezing and turning all the heating up to max, and everybody else has to take their jumpers off. I can not make a pattern out of it though. Sometimes my feet are cold, sometimes they are not, I have never thought about it as a MS problem if they have been cold, they are actually quite cold now, but I put that down to not wearing socks
My first MS attack was ice cold feet, It felt like I had my feet in a bucket of icy slush, I also suffered pins and needls, and i didnt have much feeling in them, but I suspect that is something completely different all together.
People that do not exersice will get problems with blood circulation, and that is not uncomon in us ms'ers, its not easy to do knee bends if dizzy, or your legs wont carry you. Then having ccsiv and poor blodflow on top of that probably doesnt help.

I have the cold hands and feet issue--have had it for years, was called Reynaud's syndrome by one of my drs, who said essentially nothing could be done for it.
niacin helps a bit, but in December started Inclined Bed Therapy, and that helps A LOT. Now just have a problem when rapid change in temp--say a spring day when out, then as eve progress, suddenly temperature plummets, and then I "freeze up"--but again, nowhere near the degree of disability from this that I had prior to IBT.
Clearly, my circulation has been altered for the better with the IBT.

I post about Raynaud's often, so I thought I'd link the discussions about it here. Although it's so weird and irritating that it SEEMS like it should be blamed on MS , it's definitely not exclusive to MS patients. And it is a very unique phenomenon that is nothing like a generic "cold hands and feet" symptom.

http://www.thisisms.com/ftopic-9301-day ... uds-0.html

And here's a quote from one of my posts on it that lists the recognized causes of Raynaud's - and MS is never listed as one of them:

http://www.mayoclinic.com/health/raynau ... ION=causes

Causes according to Mayo, although I suggest reading the whole link instead:
**Diseases - Scleroderma, RA, Lupus, Sjogren's, diseases of the arteries, thyroid conditions
**Carpal Tunnel Syndrome (I have that - from HNPP)
**Repetitive Trauma (like from piano & typing - I'm a pianist and secretary - HNPP again)
**Smoking (I used to)
**Medications (like beta blockers & estrogen - I take those)
**Chemical Exposure
**Injuries

And here's another thread that was trying to link Raynaud's with CCSVI:
http://www.thisisms.com/ftopicp-84089-r ... html#84089


(P.S. I fixed the link to Mayo's info on Raynaud's)

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Hi Eric,

I just read your comments on cold hands cold feet. I was diagnosed with MS almost 3 years ago and for a long time after diagnosis, I didn't have cold hands and I was still very active. I experienced bouts of chronic fatigue etc, however I wasn't affected physically for too long.

I started to notice deterioration in my physical abilities about a year ago and I feel that this is when I also noticed the extreme cold hands and feet.
Things had got so bad that I felt as though I was standing on an ice block most of the time and my husband refused to allow his feet anywhere near mine in bed!

I had the liberation procedure last month and I instantly had warmer hands and feet. There's definitly connection to the lack of physical ability and blood circulation but I also believe that CCSVI plays a big part because if you have blockages in your veins, the blood will struggle to get to the right areas regardless.

If you would like to follow progress on my Liberation Procedure, please feel free to go to myccsvijourney.weebly.com

Take care
Phoebe[/size]

Hi all,


I have had ms for 23yrs, diag when i was 16yrs old. I have always had cold hand and feet. As of say last 3 yrs, cant get around as fast the hand and feet are lick ice blocks all the time. This is really hard as if your feet are so cold you find it hard to walk even if you dont have ms. I have now read about so many folk that have this and most have tested ccsvi. I really hope so for myself.



Take care
caraboo

Me too for cold feet and hands Eric. Used to worse up until a few years agao..

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Hi Shye
Is there a connection between Raynaud's and CCSVI? My daughter was diagnosed with Raynauds years ago and the tips of her fingers are always freezing cold and discolored.

gymbuff wrote:Hi Shye
Is there a connection between Raynaud's and CCSVI? My daughter was diagnosed with Raynauds years ago and the tips of her fingers are always freezing cold and discolored.

Hi gymbuff,

Since CCSVI was just identified (and named) so recently that the research is just beginning, we have no idea what sort of symptoms will turn out to be connected with it. However, you should try the links on Raynaud's in my post above - both the Mayo explanation and the 4-page TIMS discussion.

Raynaud's is NOT the same as generally "cold hands and feet." Not the same at all. My post above points out that Raynaud's is common and has many causes, but it has never been linked with MS.

Wikipedia has an even LONGER list of not-MS reasons for Raynaud's - with pictures, although mine never gets quite that bad. Lately my bouts with Raynaud's pop up, last for a few seconds, and disappear again now that I cut the dose of my beta blocker in half:
http://en.wikipedia.org/wiki/Raynauds

Raynaud's syndrome, or "Secondary Raynaud's", occurs secondary to a wide variety of other conditions. Secondary Raynaud's has a number of associations:

Connective tissue disorders:
scleroderma[8]
systemic lupus erythematosus
rheumatoid arthritis
Sjögren's syndrome
dermatomyositis
polymyositis
mixed connective tissue disease
cold agglutinin disease
Ehlers-Danlos Syndrome
Eating disorders
anorexia nervosa
Obstructive disorders
atherosclerosis
Buerger's disease
Takayasu's arteritis
subclavian aneurysms
thoracic outlet syndrome
Drugs
Beta-blockers
cytotoxic drugs - particularly chemotherapeutics and most especially bleomycin
ciclosporin
ergotamine
sulfasalazine
anthrax vaccines whose primary ingredient is the Anthrax Protective Antigen
Occupation
jobs involving vibration, particularly drilling
exposure to vinyl chloride, mercury
exposure to the cold (e.g. by working packing frozen food)
Others
hypothyroidism
cryoglobulinemia
malignancy
reflex sympathetic dystrophy
carpal tunnel syndrome
Magnesium Deficiency
Erythromelalgia

i have been diagnosed since 2005.... and yes i have cold hands and feet all the time...
to the extreme that i sit in the hot water daily simply to warm them up... i have seen myself have my daily am shower.. then two more times during the day i will sit in the warm water to warm them up.....

Hi,

I blow dry my feet after a shower, when doing my hair. It works well
heating them up. Everyone in the house laughs at me, but for a short spell
my feet and hands are warm. Try it it works.



Caraboo

Hi Tims:
My husand was diagnosed with PPMS in 03. Among similar symptoms of MSer's I noticed that in the area of his lower back (love handle areas) his skin is purpleish and very cold to the touch. He says his feet are usually burning but last week mentioned that maybe someone could describe them as being cold ( not sure what he ment by this) Also his neck area can be discoloured. Does anyone else have these symptoms? Thank you for any replies.
Take care
Diana