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MS and Reynauds?
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MS and Reynauds?

How many Limbolanders and MS sufferes have Reynauds Primary or Phenomenon?

I keep meeting people with MS who also suffer from Reynauds so I thought I would put the question forward and see what response come back.

I tried to put up  a Poll but it wouldnt come up.

I am a limbolander with Reynauds Phenomenon.

Looking forward to hear from you tarter
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37 Comments Post a Comment
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1147609_tn?1263587031
I have Raynaud's phenomenon. My mother and sisters have it as well (they do not have MS, though, but rather a host of other autoimmune disorders).
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1056589_tn?1273750702
I have Raynauds .It started recently when it became cold. I have been in neurological  Limbo Land for almost a year.

Take care , Theresa
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338416_tn?1260996698
I have had times when my hand was white and numb - but only the last two fingers.  My foot recently has started looking white, but only on the top of the foot - the toes and ankle looks fine.
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Avatar_f_tn
I have Raynauds. Have had it for as long as I can remember and it became worse just over the past 2 years when all of my noticeable "MS" symptoms started to crop up.
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147426_tn?1317269232
I have intermittent Primary Raynaud's in my fingertips.

Autoimmune work up negative.

Quix
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Avatar_f_tn
I have MS and Raynaud's.
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941625_tn?1263585382
I think I may have this. I was reading your post and had to google what this was. I was quite shocked when I saw photos and read the description ... I've been experiencing this for about five or six years. I had no idea what it was. My fingers and toes will go completely white when chilled -- the worse the cold the faster it happens. I thought it was just cold, but I always dress for the weather and bought expensive gortex gloves and special socks and it still happens.

I'm seeing my doc for the first time next week and will mention this to him. I never thought much of it before, but now I'd like to now if that's what it is.

Thanks for the post and happy new year!


Blessings,
ArmyGirl73
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1080243_tn?1262978963
I now count eight of us with Reynauds and I know there are more people having had emails. I spoke and have an email from a Toxicologist commenting how he was seeing and noted more people with  Raynauds, iscemia, with Neurological problems.

I wonder if the blood vessels in the brain become damaged due to scarring from the leisions?
Quix will be able to help out here?

Have any of you had your blood tested more metals?
I may put another question out on this.

Its wonderful being able to share info of other health issues e have who knows this forum could come across a link the patients have the answers if the doctord would listern.



Thanks all of you for responding and happy new year.
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Avatar_f_tn
I have Raynauds in my hands as well, I never knew I had it until my first neurologist pointed it out when I was in hospital and then did more blood tests etc. on me. This was my first neuro, I have never mentioned it to my new neuro.  It is worse when I am stressed.

I think lots of people have it, I have been tested for Lupus etc. and all have been negative.

Udkas ( I have been diagnosed with TM) but without lesions showing on MRI so I think perhaps it should be probable TM?



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1080243_tn?1262978963
Yes Raynauds can react to stress like you was tested for Lupus ect all negative.
Its interesting how many of us have Raynauds though.

Thanks for your response have a happy new year tarter
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620048_tn?1358021835
I have Raynauds, for a few years now...it is vascular..........just for the count !!
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Avatar_n_tn
I have it in both hands, and feet too though they have to get really cold for it to show.

Hands is more problematic.  I find it quite painful.  I can barely touch cold things (ie. shopping in the frozen section of the supermarket and taking the frozen products from the freezer to my cart) because my hands ache.  I don't always get the colour changes, but it has happened often enough.  When I firts developed numbness in my hands my doctor attributed it to carpal tunnel (negative) then raynauds, then other symptoms popped up.  

The worst I would get it was writing three hour exams at university in exam centre or big (cool) rooms.  My hands would get really cold then turn purplish, and whitish, I'd have to go to the bathroom and run them under warm water to get the colour back and so I could keep writing.

I have really small hands though,  I'm sure this is a contributing factor, as raynauds is a blood vessel constriction disorder, so I don't have a lot of blood in my hands.  Whenever I get iv's doctors seem to blow out the viens. I end up bruised with the iv in my elbow!
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572651_tn?1333939396
I don't have raynauds - one of my sisters gets the white, waxy fingers though.  I do get very cold hands - usually just my right one but it doesn't exhibit the symptoms of raynauds. It is especially strange when this happens in summertime heat.

Sorry to break the 100% yes string that was going on here.

Lu
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739070_tn?1338607002
I have intermittnet Primary Raynaud's. DX-RRMS

Ren
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1080243_tn?1262978963
To Lulu

You havent broken the 100% you have made my day I have been telling docs for ages about one hand being affected this is very rare and if you research Raynards (raynaud's) it comes up about one hand and suggest to speak to your doctor!!

So Lulu you may well have Raynards (raynaud's)!

You are the first person I have found with one hand going white and mine can happen on a warm day also.

Lulu you have made my day cheers tarter
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338416_tn?1260996698
For years before I was diagnosed, my last two fingers would be cold on my right hand, but the rest of the hand would be hot.  To warm them up I would simply clench my fist.  Very strange.  
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Avatar_f_tn
Well, guess I'll have to be the string-breaker, if not Lu. I don't have any type of Raynaud's.

ess
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620048_tn?1358021835
Reynauds is actually quite common and with people without MS. I have know quite a few people with it.
I also saw it mentioned when reading about hearts, but of course i forgot what it said..

hugs, meg
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1080243_tn?1262978963
To meg321

Thanks meg for mentioning the people you also have met with both conditions.
I go to the Neuro clinic tommorow, I will meet many people with both it is a busy hospital in Central London.

Will start asking neuros if they think there is any conection!

Thanks tarter
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146298_tn?1258715847
limbolander here!! got raynauds fur sure. if i hold a refrigerated item for more than 5 secs the middle and ring finger tingle, go numb, then hurt like hell and swell up like purple little sausages. putting warm water on them will cause ex-freckin-cruciating pain as if id stuck my hand in a needly vice grip. holding my hand up high above my head helps the pain. it takes hours til the swelling goes away, the normal feeling comes back, and the pain stops
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333672_tn?1273796389
Well, I never thought I had Raynaud's and still don't particularly, but I did have horribly cold hands, feet and calves on both sides. This has gotten progressively worse over time. For some time, my hands have always been like ice, except in the heat of the summer away from a/c or after I've been under the covers in bed for a long time. The only saving grace was that they didn't feel cold internally--the only way I could tell my hands were so cold was to touch another part of my body.

I think I also had some sort of general temperature dysregulation as I was always cold in general. There could be people (well, college kids) out in shorts and t-shirts and I'd be wearing a midweight coat and gloves, wishing for a hat. I was always colder than everyone else. They'd all be comfortable and I'd be wearing layers and still feel a chill inside. I never seemed to get my bones warm. Except in summer, I couldn't take a shower without turning the heat up first and the thought of a lukewarm, much less cold, shower was unbearable. Every winter, I had to keep upping the temperature at which I felt comfortable.

I never got any of those pretty color changes that people describe with Raynaud's, but my hands and feet were pretty pale all the time. I was told once by a neuro that cold hands are common in MS and that it's caused by damage to the areas of the brain that control the parasympathetic nervous system.

Many of you know that I had balloon angioplasty to fix malfunctioning valves in my jugular veins. Since I had that, all of these issues have improved. I feel warmer! I can't tell you how wonderful that is. My hands are warmer. I sometimes still think they're cold, but part of it seems to be that I can now tell when they're colder. My husband doesn't seem to think they're abnormally cold anymore. My hands and feet are pinker and my husband says my face color is better.

I'm not sure if this is relevant to this thread or not, but that's my two cents.

sho

PS I am dx'd with MS.
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338416_tn?1260996698
I think my temperature regulation is a little weird.  Sometimes I'll be in shirt sleeves when the people around me are cold... and vice versa.
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1080243_tn?1262978963
to Diemyn

Thanks for your response have you got any other autoimmune problems i note you mention fingers swelling?

I am also still limbolander but near to diagnoisis I think had another scan today so await results.

Thanks tarter
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1080243_tn?1262978963
To Shoshin,

I am glad you mention the pale feet and hands I have friend with MS she was a policewoman and she said they look like someones has died!! good description I think.

I was at the Neuro hospital today and I am blown away how many MS sufferes have this complaint.

Thanks for your comments tarter
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1080243_tn?1262978963
Hi jen,

I think your comment is interesting about tempreture regulation its the same with the heat in the summer cannot regulate over heating then!

Take care tarter
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338416_tn?1260996698
It's very common for people with MS to have heat intolerance.  I can't take temps higher than 90° - I get real dizzy and have to sleep for a few hours.
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1080243_tn?1262978963
To essdipity,

I wondered how long you have had MS?
Yesterday met a lady has MS 11 yrs and just started to get problems with circulation in hands.

Doctors think Raynauds she has never suffered with this before maybe MS can cause Raynauds for the future.

My attacts are less than they were 3yrs ago maybe will out grow them.

Glad you are not with anyway take care tarter
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293157_tn?1285877039
Dr think I have it, but the blood test don't show it...??
take care
wobbly
dx
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1080243_tn?1262978963
Hi Wobbly

Dr have only examined my hand when in colour change and diagnoised on presentation alone both Neuro and GP and Rhemy never had a blood test to confirm.

Thanks for posting tarter
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Bump
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Avatar_f_tn
I am dx'd with RRMS and also have Raynaud's.  Can the tongue also be affected?  My tongue gets very painful when eating cold things.
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1080243_tn?1262978963
To Deb:


Yes along with ears and nose infacr yesterday i had the tongue thing and i bite it becase of the numb area.

How long have you Raynauds did it appear before or after dx of MS

Nice to hear from you havent spoken with you before tarter
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987762_tn?1331031553
I've had a Raynauds type issue in my feet for years, the 2009 winter brought the purple up to my knees, and i acquired Livedo Reticularis all over my body (its a vascular condition characterized by a purplish mottled discoloration of the skin) that i'd not had before. I also get purple fingers and white hands but it isn't as standoutish as my feet, the feet turn a startling shade of blue, sometimes my toes look like they are dead, to the touch my hands and legs are like ice. I dont feel it happening but then again half the time i cant feel my feet anyway, my hands though hurt in the cold and sometimes i'm just about ready to chop them off lol.

I've only ever been told i have "poor circulation" but i cant recall ever having a blood test to find out if it is Raynaulds. Blood test tell a story of me being a picture of health (eyes rolling, and an amused disbelief with a strong "yeah right pull the other one it plays jingle bells"), if i'm a picture of health i'd hate to know what i'm going to feel like or what else is going to happen to me by the time i find out its name.

Raynauds i think for many here is secondary to the underlying condition, for the undx like myself then its muddying the picture, it still makes the MS mimics still possible because its also a common issue for people with Lupus, vascular etc too. What ever is going on with me has this little circulation issue of mine going off the rails, its better in the warmer months but i still get purple limbs everyday, just not all day so does that still make it true Raynauds which is only documented as being an abnormal reaction to cold?

Cheers........JJ

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Avatar_f_tn
Ok, after my daughter was born 7 yrs ago I started to notice my toe turning red and I have always had pain in my feet.. especially when I was a kinda.. I would wake up and my feet would hurt so bad!! well anywho.. About 2 years ago i went to New jersey to see some friends and Family and I got strep really bad and then my hands, feet started turning bright purple and PAIN omg I think I would rather have a c-section (which I had) without any pain killers.. holy canoli's.. Now its the nerve surges and pain during the summer and when it is rainy and balmy.. Grrr. I have been tested for Lupus, RA, and gout everything they can check for and NOTHING. Now I am having really bad Muscle Jerks and it makes it hard to sleep. I am soooo Confused with the raynauds that kinda came out of the blue and now I can't even work because I dropped a huge can on my foot and broke it and got a bone infection but the raynauds and muscle jerks is not letting it heal.. IDK WAT TO DO SOMEONE HELP ME!!
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710547_tn?1295449630
Hi, I have raynauds, and erythromelalgia.  Both are causing tremendous problems right now.  I am getting blue from the raynauds while simultaneously getting red/purple with erythro. and it causes terrible - I repeat - TERRIBLE ITCHING!  I can't take it!  I've gotten used to having frozen fingers and toes, but I can't handle it when they get hot and itch.  Oh, the troubles we've seen!  It's not funny, but without humor, I think I'll lose it.  ha  Jan
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Avatar_m_tn
I have had it since a teenager. It's worse during times of stress, and cold obviously. But these last few years running the fever it hasn't been as bad as in the past without a fever.

My RA, lupus and Sjorgen's workups were negative too. Limbolander with high thyroid antibodies and now a whole host of other autoimmune problems I never knew about until recently.

Nobody else in my family has Raynaud's, but my son looks like he's starting to get it. He's only ten.
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Avatar_f_tn
I have both, too.
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