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.