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.

This us an example of the 'line' I was talking about - it doesn't always happen, sometimes I just get white blotches on my hands, fingers and feet, sometimes the line goes across several fingers and might be down to the second joint, or even the whole finger. This pic was taken in low light, and I haven't done anything to enhance it - I was just glowing like a white beacon.

Yup, that sure looks like Raynaud's...and that's got to hurt! So sorry Lynn :hug:.

With love, Erika

WOW Lyn, That is something:eek:.

:hug:

It's weird when it happens this bad - as if I don't have enough trouble with numb fingers already :rolleyes:

I usually shake my hands a lot and run them under warm water and it comes back to normal - a nasty feeling though. I have never shown this to a doctor, perhaps I should - I doubt it would make any difference.

I'd still mention it to your doctor, just so they're aware.

They do have medications that you can take if it gets to be too much - for now, I'll deal with the kaleidoscope of colours I get with mine. Thank you for sharing the photo Lynn, that's a great photo (not great that you have the condition, but a fantastic example of it).

I wanted to post a photo of my feet from the pictures I took, but I will have to come back later with one, I seem to have "misplaced" them on my computer somewhere. :rolleyes: ... we all know how that goes. lol.

Plus, I'm not entirely sure how to post a picture without a URL, but I'll figure it out. :) :hug:

Okay, I think I got them figured out. The first 2 are the same foot, you can see the progression of the white areas returning to 'normal' skin colour.

The 3rd was the other foot, which was harder for me to get a photo of for whatever reason, the markings on it were quite unique looking.

Wow - my feet go like that too - well similar anyhow. No fun at all!

No, not fun, especially when the blood flow starts to get back into those areas. Oh the ache. :(

My friend recommended these slippers she swears by (she has fibromyalgia and is constantly cold). They're down-filled and so light, as light as socks. They don't make my feet feel as though they're sweating, but when I take them off my feet are toasty warm.

Great investment for sure, as I understand with Raynaud's, keeping extremities warm is a big part of dealing with episodes. Now, to find something similar for my hands. ;)

Hi Laura,

My daughter has Primary Raynaud's Phenomenon. She has medical documentation of symptoms (Toes/feet and fingers/hands) when she was in 6th grade. Unfortunately, that visit was with a Physicians Assistant who said 'no, it's not Raynaud's when I voiced my concern about Raynaud's.

It was quite sometime later that she saw her Primary Care Physician and he confirmed what I suspected, Raynaud's. She has not, to date, used any medication for her Raynaud's. She is now 22 years old.

With Raynaud's you do need to be very careful as you will be more prone to frost bite. Stress can also trigger Raynaud's to flare-up.

got it too! I like to freak out people on summer days with it :D

It can a diagnosis all unto itself or accompany another diagnosis. It does not always show up on blood tests either.

My DH just says I have cold feet, warm heart. I kind of like that positive spin on my blotchy, bright cold hands & feet (and sometimes even my fanny :eek:)

My daughter and I were at the Butterfly Pavilion today and it is a tropical climate controlled area (very warm and humid).

My daughter pointed out her feet and hands which were red due to the warmth and humid nature of the environment. So apparently Raynaud's can affect you even in heat and humidity or no humidity as it happens to her in dry heat too.

In response to the earlier post about how raynaud's is vascular and ms isn't, that's sort of true, but sort of isn't since the vascular system along with everything else in the body is control by the nervous system. Ms effects the nervous system and as such the nervous system can effect the vascular system leading to things like vascular neuropathy, low blood pressure, high blood pressure, cardiac events, and it stands to reason yes Raynaud's syndrome as well, especially given the occurrence of the members having similar effects and diagnosis'. Myself included, my poor husband says that snuggling up with me some nights is like sleeping with a corpse:p. Hands and halfway up the arms will be frozen, feet and legs right up to the hinny, for me though it generally isn't painful, though I feel the cold and agree with the husband and feel the need to separate body parts with careful tucking of the blankets, but it can be painful when stepping on the frozen feet until they warm up, or if I have hold anything cold in my hands. I live in southeast ga and have to wear knee high socks year round and gloves well into the start of summer (90 deg and up). Of course still waiting on any kind of diagnosis, though almost all of my doctors are convinced its ms and even the neuro is mostly convinced but I'll hopefully have an answer in august.