MS...and now, a Raynaud's syndrome DX?!
 

:eek:

Okay, so I figured M.S. was just being screwy with me the last few years with my body temperature and whatnot (I'm always cold cold, especially fingers/toes). Then I wondered if it was perhaps low body fat/weight % or something, but my doctor assured me all along that I was healthy in those respects.

So this Winter, I noticed whenever I'd be out, not in really brutal cold, but in damp moderate cold, my toes would ACHE. Horribly. I had to stop many a time at the entrance to Wal-mart and rub my feet through my socks because I thought they were frozen and I'd got frostbite or something.

This went on for a while, off and on. Then, on a trip one day to Costco with the hubby, I went to get our membership card out of my wallet, and he gasped at the sight of my right hand - my fingers were Smurf blue. I assured him "It's okay, I've seen 1 or 2 fingers turn black and blue before... my Nana had this happen, it's probably something I inherited...". Never did I think to take any photos. After Costco, we went to another store, and it was a bit warmer in there (me with hands in pockets) and the ache. Oh my gosh... my fingers were throbbing!!!

So at this point hubby insisted I go to see the doctor about this. I called, and the secretary asked "Do you have photos of this?". Good point, no I didn't.

So, fast forward a week or so, out again, came home, feet throbbing and aching, take off boots and socks and voila. White toe, red toe, 2 white toes, 1 big blue toe, ball of foot has white patches randomly scattered.

Other foot in pretty much the same shape. Plenty of photos taken.

So I see my GP and wouldn't you know it? She says right away "That's Raynaud's syndrome...". Having heard of Raynaud's before, not surprised (I've seen the photos of the hands and feet). So good to have a diagnosis, but darn, another things?! Really?! :rolleyes:

I don't have "Raynaud's Disease" she assured me, because they've tested me a few times now for AI conditions, where IF I had the disease they'd have seen the markers in my blood, and that's always checked out fine.

So it seems I have the syndrome rather than the disease, and it could progressively (and likely will) get worse over time.

Not taking any medications for this now, she just told me to watch out for signs of it and to be sure I can restore circulation etc to the areas affected, avoid cold & damp, etc.

Fun fun!

Anyone else familiar with Raynaud's around here? I've only skimmed 1 entry on the nets about it, so I am not overly familiar. Can it be a secondary symptom to M.S.?

Hope you've all been doing well! :grouphug:

I always thought that Raynaud's Syndrome was just another MS SX.
Don't we all have a touch of that, to one degree or another?

Laura, what does your Doc prescribe for it?

:hug:

I always thought that it was an MS related thing too because I've had it for about as long as the MS (DXed in 1978), but only a few of my fingers have been affected.
I'm not sure if there is anything that you can take for it but it might be something to look into, because it sounds like your case is quite severe with all extremities affected. Man, that's got to hurt!

Its good that you have been tested for other auto-immune diseases because it is quite common in lupus and scleroderma.

I have found that drinking too much coffee and/or getting dehydrated both make it more likely to come on, so maybe try keeping a check on those things to see if it improves.

With love, Erika

Hello Laura :)

My daughter has Raynaud's so I have some knowledge of Raynaud's.

Raynaud's affects blood vessels and I am unaware of MS affecting (primary or secondary) blood vessels. Unfortunately, you have 2 separate diagnosis, MS and Raynaud's.

Information about Raynaud's:
http://my.clevelandclinic.org/heart/.../raynauds.aspx

Count me in on this one. I have never turned blue though - just a waxy yellowish white colour, usually on a couple of fingers and I always have a very distinct line across a joint where it shows the demarcation between blood flow areas.

Not pleasant.

I got a Raynaud's diagnosis in 2009…..

I still don't have an MS diagnosis though….

I never would have actually linked the two to be honest.

Thanks for this Snoopy! :hug: Sorry to hear your daughter has Raynaud's. Does she have the disease or syndrome?

I do know it affects the blood vessels, and I didn't think it was directly associated with MS. I know regulating temperature for folks with MS is a problem for sure, but this is quite extraordinary what happens with my fingers and toes (and other parts of hands/feet).

It happens mostly, from what I've noticed, in cold & damp weather. If it's very cold and dry I haven't seen it happen that I can recall, though in damp/cold, definitely.

I do know that Raynaud's syndrome is mentioned alongside M.S. in some things I've read, so it's confusing for sure. At the end of the day I guess it hardly matters - I have M.S. and I have Raynaud's syndrome.

My doctor said there's medications you can take for it if it's very bad, but she wouldn't want me to take them unless I really needed them. They can lower blood pressure, and I already have quite low blood pressure.

My SIL and 2 of her sisters all have Raynaud's. I'm not sure which type each of them has but I do know they carry gloves with them all the time, even in the summer. My SIL's fingers become like Lynn's, whitish yellow.

I am sorry you have to now deal with this diagnosis as well but at least you now know what is causing this symptom.

Hang in there and carry gloves and other warming devices like the ones you can put in your gloves and/or socks.:hug::grouphug:

Thank you tkrik :) and thank you for sharing.

I wear 2 layers of socks, most times in the summer as well. I don't find that my hands are too bad in the summer, but I'll keep that glove suggestion in mind (I'll pick up a pair to carry in my purse, I have 2 pairs I carry with me in my coat pockets in the Winter).

I just bought, at the suggestion of a friend, boots called "Hut Boots" (or formerly called - they've since changed the name of them) which are for indoor wear to warm up the feet after you've been outdoors for an extended period (skiing, for example). She has fibro and has severe cold issues in hands/feet, and swears by the boots (they're more like a boot slipper). Says she can't live without them, especially when it's very cold and damp. Perfect! I'll get them in the mail shortly, I hope they do the trick, they weren't cheap (but where health and well being are concerned, I think it's important to splurge on good items!).

Weather's warming up here. Now get this... while I have the Raynaud's affecting my hands/feet, once the humidity kicks in for the summer, I have "dyshidrosis" (form of eczema) on my thumbs, index, and middle fingers. Both hands. My mother also gets this. They sometimes call it "bad sweating".

Goooo figure! lol! When life throws lemons at you, make lemonaid! ;)

That's different Lynn, I've not noticed a line across the joint as you explain/describe, but I'll be on the look out for oddities.

Do you find your fingers and toes ache horribly at times?

:hug: Sorry to hear that you have this as well. Le sigh.