MS and cold hands and feet

[shoshin]

There was a thread a while ago about cold extremities that included both cold paresthesias and cold that is really cold to the touch. I have the latter problem.

Anyway, I had an exam by a different neuro this past week and when he shook my hand at the beginning, he made some remark about it being cold. For once, I had the presence of mind to ask my question at the time (I always think of a zillion things I should've asked afterwards, but it's like I go to these appointments and my brain turns to mush).

He said the cold hands, feet, etc. were "classic" for MS. Apparently, this is caused by a problem with communication to the parasympathetic nervous system and thence to the blood vessels in the hands, feet, etc. (I'm still not clear on exactly how this works). He said it's probably caused by a lesion in the spine, but could also be... (and here he rattled off a couple parts of the brain, which I have not retained. I think one was the hypothalamus?)

Just thought someone else might be interested in this bit of info...

sho

[SuperChicken11]

I have read that temperature disregulation is another symptom of MS.

My hands and feet are so cold that it's affecting my work... To be able to use a keyboard I have to sit on my hands for about 5 minutes every half hour. (Shoving my hands into my armpits works much faster but I can't afford to be seen doing that at work!) As for my feet, they just freeze and there's nothing I have found that helps (socks just feel like my cold feet are wearing socks.)

A heating pad works at night but the one time I brought my heating pad to use at my desk, my supervisor made me get a doctor's note clearing me to be at work.

[Joerobbie48]

Hi, I got my first demyelination about Sept or Oct 2017. Lost 50 lbs in about 4 months, night sweats, and had miserably cold hands and feet. Other symptoms too including overwhelming fatigue.  I had been to a naturopath for AFIB and borderline blood pressure. Went back to her after MRI and she advised weekly chelation and ozone autohemotherapy. Added daily ozone treatment at home via rectal insufflation, and that has made all the difference. I feel human again and symptoms have largely abated. All this is legal in California but may not be in other States. God bless and good luck.

[gypsyflyer]

Me too, have MS. And oh BTW...Raynaud's is only a SYMPTOM of a root cause. Expand your mind.

[joliejones]

I have had cold hands and feet since before I can remember. However I have never been diagnosed with anything.  Someone told me I might have Reynauds.  Anyway I just thought I would tell you I found this thing called My Heat Buddy. It is like a handmuff that you charge for a couple f minutes and then unplug.  I stick my hands in it and they stay toasty warm for hours. It has been a godsend I use it everywhere, in my car, bed on the couch.  Oh, and it can go cold too but I never use it that way.

[yankeetransplant50]

Saw the comment about cold hands and feet that you made. Except  in Oklahoma summers, I stay COLD. Feet and hands feel like ice. Sometimes, I'll touch them with my hands and they will be warm to the touch and I'll think I am
literally freezing at night.  By the time it is 70 degrees F, I have on two pair of long john's and two pair of wool socks, equivalent on top.  This has gone on for several years and  I  see these sx  as part of the "MS Package." Not fun, but it can be managed most of  the time.  It does help to travel with a heating pad and extension cord in baggage and warm socks when the environment may be too cold for us. For hands, I have some little microwave warmers I put in my pockets after warming them.  Am about to order some fingerless gloves to see if that helps indoors. I've perceived this as autonomic instability.

[seeknpeace]

My problem is multi.  I am actually freezing, shivering, with my feet like blocks of ice as well as my hands.  I struggle to get both warm.  My hands feel like they are numb, but also like they are tuning forks.  The sensation of touch vibrates. My feet feel like balloons, and as if I always have socks on and they are blocks of ice.  When I do wear socks, it feels like there is dirt or debris of some sort between my toes.  I have been diagnosed since 06 and initially my symptoms were physical and cognitive. Betaseron took away almost all of the physical but not the cognitive so that I became disabled from my job as a financial planner.  That has not changed, the cognitive issues.  I also am very emotional, cry or become enraged easily. I want to be isolated. My personality has changed. I have to add that marital issues out of my control were revealed around the same time that were heart breaking, but my reaction has been bizarre and I cannot recover with medicine or with treatment.

So, I have to wonder how this is all related, will I ever recover, am I doomed to freeze and then become very hot, as I can go from shivering to sweating and then back again in a second and this is not hot flashes.  I feel isolated and I do not even know who I am now, and after a stint with steroids, I have become very aware how very bad I feel.  I, for the first time, suicidal.  I do not want to contiue to live this way.  I may try to start a thread somewhere regarding personality changes, has anyone had these, but I do have this problem.  Also, I will run a low grade fever, up to 100, almost every day.  

Anyone else doing this?

[alge2121]

I've been feeling the same way you've described for the last few days , cold but sweating in my sleep, shivering with sweats feeling like I have the flu but my temp was 98.1 I just staying positive for my daughters but I feel like my relationship with my wife is being affected. We just have try to be strong

[Audrey_M]

For me, the coldness usually strikes only my right hand (the dominant one), which also experiences more numbness and tingling than the left hand. It feels like ice, even to others, however there is no change in color.

I haven't had any problems with my feet.

[Lulu54]

Hi - welcome to the forum here.  You may not realize it, but you have found a rather old post (from 2008) and many people won't stop to read it because of its age.

You may want to start a new thread and introduce yourself - we love to meet and greet new members here.

Welcome again and I  will watch for you around.

Lulu

[QueenBb]

Another reason you have cold hands and feet could be because you suffer from a condition called Ryanauld's syndrome. this is a condition where your blood cells don't carry enough oxygen to your extremeties so even at the freezer aisle of the grocery store you feel like your fingers are about to go numb from cold. Or you wash your hands even with warm water but minutes later, you feel like your fingers are about to go numb. in 60 degree weather you feel like you need gloves.

[b125]

I too have always had cold hands and feet - especially the feet. The orderly at the hospital when I was dx'd noticed that my feet were bare and no one had given me the slipper socks they normally provide - he was kind enough to get some for me, and even he commented that my feet were like ice cubes.
It is interesting to note that restless leg syndrome was mentioned above... apparently in studies of VA hospital patients with and without MS, sleep related movement disorder (ie. twitching or kicking of the legs) was found to me much more prevalent amongst those with MS. Sleep disorders in general were, but sleep-related movement disorders were the only ones they have so far thought may acutually be related to the MS. I had problems for years with involuntary kicking of my legs, and sometimes a jerking of my entire body that would wake me up at night out of even a deep sleep - never bothered to do anything about it. It makes me wonder now though if an MRI years sooner would have shown something too.

[sweepea77]

Thank you for the information.  I have a MRI tomorrow morning to see if I have MS and one of the things that has been plaguing me for years is COLD hands and feet!  I can be in bed for hours and still have freezing feet.  I can't wear socks to bed because they bother my Restless Leg Syndrome.  So, I suffer and freeze!

[Tahiri_Veila]

Wow! that is really interesting as I have always had cold hands.  Although when I was younger they were cold and clammy.  Good thing that is over with.  I do also have cold feet and prefer to always wear socks.  I also am not diagnosed so I find this very interesting.
  Tahiri

[shoshin]

Actually, I have not solved the cold problem. In fact, you may remember my thread from a while ago about how I was really cold in bed and overcompensated so much with blankets that when I got up for my ritual midnight trip to the bathroom I could hardly move. So you may not want my advice on this topic...

For me, the problem has decreased over time for the less than desirable reason that my temperature perception seems to have diminished. So I am usually more aware of the problem when I touch a cold spot with some other part of my body than I am internally. This tends to make the whole cold thing more of a problem for my husband than for me.

sho

[Lulu54]

I have been plagued with extremely cold hands for a good six months or so.  I just googled MS and cold hands and this old post of yours was one of the first things that popped up.  I'm wondering if you ever found a way to compensate for the cold extremities? I am dreading winter weather that has to be coming soon.  I will look pretty silly at my computer wearing gloves but I fear it may become a necessity.  Thanks, Lulu

[julia111]

Same here .  .  . I've always had cold hands and cold feet . .  . even after excersing in 90 degree weather .  .  .  no MS dx. for me, just Fibromyalgia .  .  . thanks for the info!

Julia

[wingnut19]

Hi

Wow, how interesting....

I have always had cold hands and feet--even in the summer....I am not dx with anything yet, but I did find this intriguing....

I would have never thought that it was MS related at all.....I used to always use the, "Cold hands, warm heart" excuse....

Thanks for the info!

Tammy  :)

[Jamus35]

Has anyone gone to a vein Doc?  It seems like blood is not flowing the way it is supposed to.  It kind of backs up CCSVI?  The warm blood is not getting where it is suppose to be.