Raynaud's phenomenon in MS ( ?? )

Question

hey guys -

What's the likelihood that someone with MS would suffer w/ Raynaud's phenomenon.  I know it's common in many other autoimmune disorders .. but does anyone ( diagnosed with MS ) on this forum experience Raynaud's ?

- Alisa

HVAC · Answer

This is an old post. Feel free to start your own post. I did not know that about steroids. I have never had steroids for MS but for cancer. I have a permanent port so no troubles at all with veins.

Alex

Libz1968 · Answer

I was diagnosed with MS in 2006.  How many of you MS PATIENTS. Have recieved treatments with steroids... Perhaps IV Solumedrol at the hospital or orally with prednisone... After about my fourth stay in the hospital the care givers started having trouble FINDING MY VEINS for blood draw or puttin the 
IV in.  I asked why the trouble all the sudden.  An experienced nurse mumbled "OH YOU KNOW HONEY THOSE STEROIDS SHRINK YOUR VEINS".  Well NO.  Actually honey did not know this.  As soon as I got my hands on my laptop I started googling and sure enough over time steroids shink veins, vessels and you can follow the logic...ultimately it can cause heart failure.  

If you back that up to shrunken capillaries veins in your extremities....why couldn't it evolve into or present like Raynauds...  It seems perfectly logical to me,  

Stay on top of your systems people.  No one else will.  Keep a journal, log...call it what you like and then go tell your doctor what is wrong,

Peace out
Be well
Libby

Fiona_Fight · Answer

i was diagnosed with raynauds when I was 20 and then finally diagnosed with MS at 32.

Rico211075 · Answer

While not a reliable source, Wikipedia's article on the phenomenon says that Secondary Raynaud's can precede the diagnosable onset of MS by about 20. Something I find extremely interesting as I was diagnosed by a rheumatologist as having the phenomenon when I was 16, I'm now 38 (almost) and recently began showing definable movement problems associated with MS.

chickisue · Answer

I was dianosed with MS in'92. I didn't notice Raynards until 2010 when two fingers went white. At times they fingers have turned purple and even red.  The first time it happened I panic and called the doctor. He explained what it was and instructed me to go online and look it up.
I was led to believe that it wasn't linked to MS. I have friends who also have Raynards and no MS

Shadyboy32 · Answer

Raynaud's disease is when cappillaries of the skin are damaged either by mechanical damage ie vibration or naturally but other diseases underlying can cause Raynaud's disease. I suffer in cold conditions from numb deflated fingers and toes.. But also in warm conditions my hands swell and go numb.. For the past two months I wake up every morning with numb tingly sensations in my fingers. To which I haven't contacted my gp about as I find they don't have a clue... Life ***** lol

nikmurph · Answer

I had Raynaud's phenomenon for years, and for whatever reason just assumed it was normal. More recently I found out I had a gluten intolerance or allergy, and the Raunaud's resolved completely, along with the gastrointestinal problems.

AshleyB93 · Answer

Deb,
Your reply to this article really caught my attention. I've been diagnosed with Reynaud's Syndrome for a few years now. When I was first diagnosed with it my doctor had also noticed some weird things going on with my blood and said I might have an auto immune disease but never was able to give me an exact diagnosis. Just this past year or a little longer my tongue has been going completely numb and turning white also. I've been to many different specialists and all of them have said that they have never seen this before. I started doing a little research on my own just on the internet and stuff and after reading have noticed I've had some symptoms that are related to MS but have never had an MRI to see if it's possible that I have it.

Annfairfax · Answer

Hello to all. I too have so may of the same symptoms, including an enlarged vein in my neck, raynauld's, arm/hand pain & tingling, etc. I've thought for some time that MS could be the culprit. Doctors here in MI always want to blame it in being in my 40's....hummm. very disappointing. Need a doc that listens to the symptoms and doesn't ignore the test results. Happy New Year & good health to all

kcmessina · Answer

I have a suspected auto immune disorder, first major flare up when I was 19 and now experiencing a second major flare up at 25. Tests have been ordered...repeatedly, but given my age, I've been afraid of the implications of being diagnosed with an incurable life long disease, while aware of the benefits of early treatment & diagnosis....outs still a bit of a debate to me. Ultimately I know im probably better off knowing than not. Hopefully this helps somebody out there with a similar quandry to mine...

deborah0904 · Answer

I was dx'd w/Raynauds around 1995.  I also have problems talking after eating icecream, etc.  I wasn''t dx'd w/MS until November 2008 however; I apparently have had MS since a child.

Jaymee79 · Answer

I have Raynauld's Phemon and MS as well.  Raynauld's came around when I was 17, MS I was diagnosed with at 24, both conditions are thought you have occurred sooner than their diagnosis date, and my Neuro thoroughly believes my Raynauld's is directly linked to my MS.

LovelyLynn · Answer

I have Raynaud's since 2004 and I was diagnosed with MS in 2003. I am 34 yrs old and never thought the 2 were connected. But Raynaud's is effected by cold weather, I can't hold anything cold. I need to wear gloves when shopping in the freezer section in the winter. I'm in Buffalo, NY (lol). Also the fatigue is my biggest issue I take 400mg of Provigil a day and 2640 mg of L-caratine a day.
Recently I have participated in Venus doppler study show that MS patients have abnormal Venus doppler of the neck area. I would to hear feed back and you can write to me direct at:la_rwt4e***@****

meg321 · Answer

Hi,

I have had Reynauds for a few years, but i have probably has MS for a long time also. But  i have never connected the two, but i guess it could be related, but i have just started the MS search.   Reynauds is much worse in the cold weather, its ok when its warm.

hugs, meg

tot_teacher · Answer

Thanks all -

It's on my list to mention on Tuesday when I see my PCP.  No symptoms seem to fit any one disorder.  I'm now off to investigate whether you can have Optic Neuritis in either Scleroderma or Lupus.  I fit those symptoms as well.  I'm also not sure about visual disturbances in other autoimmune disorders.

Anyway,  Thanks so much for gathering info for me, I sooooo appreciate it.  You all are awesome.  I hope to gather enough info that I may also one day be more of help to others who post here.

Well, I'm off ..............

- Alisa

slightlybroken · Answer

Here's one thing I found on Raynauds

"Raynaud's disease is a rare disorder of the blood vessels, usually in the fingers and toes. People with this disorder have attacks that cause the blood vessels to narrow. When this happens, blood can't get to the surface of the skin and the affected areas turn white and blue. When the blood flow returns, the skin turns red and throbs or tingles. In severe cases, loss of blood flow can cause sores or tissue death. Cold weather and stress can trigger attacks. Often the cause of Raynaud's is not known. People in colder climates are more likely to develop Raynaud's than people in warmer areas." 

You are describing one part of Raynauds..." (Normal feeling hands enter the shower but within seconds they have turned bright red and seem to throb)"...but you don't seem to have a reaction to cold. 

Most of what I've read about Raynauds have both because the cold causes the already narrowed blood vessels to constrict more...then the warm exposure causes the blood vessels to open more and the blood to rush in. That's why they turn bright red and throb. I've also read that sometimes the blood vessels are in a spasm causing the constriction.

I'm not sure if what your experiencing is Raynauds or not ...but it definitely points to a circulatory reason..and I would tell your doctor if it kept happening.

Quixotic1 · Answer

Alisa - what you are describing is not Raynaud's Phenomenon.  It may be a very reactive sympathetic nervous system response to the warmth on your hands.

Isolated Raynaud's is actually pretty common in the population.  I have had it on and off since about 1987.  My MS appeared in 2004, so I am pretty sure they are unrelated.

There is no reason that any person with MS couldn't have it as an unrelated phenomenon.

Quix

Lulu54 · Answer

Alisa
From the Merck medical guide - 
www.merck.com/mmpe/sec07/ch080/ch080g.html#sec07-ch080-ch080g-1726

Raynaud's syndrome is vasospasm of parts of the hand in response to cold or emotional stress, causing reversible discomfort and color changes (pallor, cyanosis, erythema, or a combination) in one or more digits. Occasionally, other acral parts (eg, nose, tongue) are affected. The disorder may be primary or secondary. Diagnosis is clinical; testing focuses on distinguishing primary from secondary disease. Treatment of uncomplicated cases includes avoidance of cold, biofeedback, smoking cessation, and, as needed, vasodilating Ca channel blockers (eg, nifedipine) or prazosin"

It reads pretty straight forward that it appears only in cold - maybe someone else know of heat causing it but it isn't listed there.  I hope that helps, Lulu

tot_teacher · Answer

Deb -

I've never noticed 'cold' causing Raynaud's type symptoms.  The strange thing is that I only experience it when I'm taking a shower.  The water is not too hot nor cold and I'm wondering if it's the temp change or the water pellets hitting my hands causing it.  I've recently starting getting goosebumps for no apparent reason ( usually from touch or I've also noticed them after I was my hands ).  I get the goosebumps on my forearms mostly, though I've seen them on my thighs as well.

Normal feeling hands enter the shower but within seconds they have turned bright red and seem to throb.  This seems to suggest a cardio-vascular response, don't you think ?  Just as quick as it started, as soon as my hands are out of the shower, they return to normal ( I do notice that the blood vessels in my hand are more prominent for a minute or two when I'm out of the shower, but the color is normal )

Does any of this fit Raynaud's if I don't seem to react to cold? or if my fingers/toes don't seem to stay cold?

Any suggestions would be great.

- Alisa 
"Limboland ***** -- I want to go home!"

Deb61 · Answer

I have been diagnosed with Raynaud's by a rheumatologist years before my diagnosis with MS.  I noticed an air of skepticism when I told my neuro about the diagnosis--not sure if he agrees that I actually have this or the Raynaud's-like symptoms are due to MS.    

Interestingly enough, right after my diagnosis we talked my tongue going numb to the point that I can't talk after eating or drinking something cold, because I had just had a cold drink before I went to see him and couldn't talk with my sister.  He said that this had to do with the MS.

Deb