Raynaud's Phenomenon & MS

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Postby C3Glo » Mon Dec 14, 2009 9:51 pm

dignan wrote:The one thing I've noticed that makes it worse is caffeine, but without that, life isn't worth living, so I just deal with the white fingers.


LOL!!!! ... I rarely have caffine as it just doesn't do well with my body! Makes me sick! ... iteresting that it would make it worse for you though!
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Postby nicko » Mon Dec 14, 2009 10:06 pm

I've had it since my MS symptoms appeared. I always thought it was related but my neuro always told me otherwise.

My entire left arm goes blue, sometimes just the hand or fingertips. Also i've noticed my left foot doing the same thing as well lately.
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Postby Cyclops » Tue Dec 15, 2009 1:06 am

That's interesting - my dad's hands go numb though he has never received a specific diagnosis for it. I don't have it though my neuro did comment that my fingers were slightly purple. They've always been that colour so I didn't think much of it.

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Postby jimmylegs » Tue Dec 15, 2009 5:51 am

how much caffeine, dignanlegs? you know it makes you pee out all your minerals right??
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Postby crocky » Tue Dec 15, 2009 9:47 am

Hi
I definately suffer from Reynalds syndrome and have done for as long as I can remember - ie long before the MS kicked in.
My hands go completely white and look dead as do my feet - wow I hate cold weather - and its absolute agony when they are thawing out.
The thing that makes it a whole lot worse for me is smoking - I am quitting next Monday - never had reason to before (apart from the obvious), but this CCVSI thing is the best reason I've ever heard!
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Postby dignan » Tue Dec 15, 2009 10:09 am

Just one little cup of coffee jimmy, that's all. Sure, I can stand a spoon up in the coffee, but it's just one cup.
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Postby mrhodes40 » Tue Dec 15, 2009 11:34 am

I have Raynaud's and I get 1000mg of Ca and about 1000 of Mg and 22.5 of zinc daily in my milti.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby jimmylegs » Tue Dec 15, 2009 2:43 pm

lol @ dignan

marie, maybe NHE will chime in here to let us know what else he does along with his mineral intake changes, that could have acted synergistically to correct his raynauds..

we shall see!
JL
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Postby euphoniaa » Wed Dec 16, 2009 6:37 am

I've had Raynaud's since I switched from one BP med to a beta blocker many years ago, and in fact mine got truly horrible last summer when I added an additional BP med. I had to stop the new med, because Raynaud's attacks became so common and severe I couldn't even touch a cool magazine in an air conditioned waiting room without my fingers going white and giving me extreme pain.

Mayo has a good section on it, and notes the many things that have been shown to cause it so far. MS is NOT on the long list, although Raynaud's is a circulatory disorder.

Raynaud's is actually worse than most any MS symptom I get and inhibits my enjoyment of life more than they do - even more inhibiting than my use of a cane, due to my need to avoid cold weather events & stuff. It's one of the many reasons I often say that if my MS disappeared I'm afraid I wouldn't even notice the change in my life. So much for the potential of CCSVI treatment turning people like me into instantly healthy individuals. :)

But I still wish better health and better news to all. :)

P.S. I hate to say it, but my reactions to most recommended vitamins and supplements have been much worse than most of my MS symptoms, too. I suggest trying them one at a time and monitoring their effects.

http://www.mayoclinic.com/health/raynau ... ION=causes

Causes according to Mayo, although I suggest reading the whole link instead:
**Diseases - Scleroderma, RA, Lupus, Sjogren's, diseases of the arteries, thyroid conditions
**Carpal Tunnel Syndrome (I have that - from HNPP)
**Repetitive Trauma (like from piano & typing - I'm a pianist and secretary - HNPP again)
**Smoking (I used to)
**Medications (like beta blockers & estrogen - I take those)
**Chemical Exposure
**Injuries
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby jay123 » Wed Dec 16, 2009 7:52 am

Interesting info, but is it CCSVI related or should this be in 'general MS topics'?
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Postby euphoniaa » Wed Dec 16, 2009 8:06 am

jay123 wrote:Interesting info, but is it CCSVI related or should this be in 'general MS topics'?


Good question. In my humble opinion, Raynaud's is not even related to MS at all, but it comes up regularly on MS forums because it's so infuriating and painful it just SEEMS like it should be due to MS. :) My point was that even CCSVI treatment probably won't get rid of it.

I repeat my continual mantra... It's not always MS... It's not always MS... It's not always MS. :)
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby shye » Wed Dec 16, 2009 10:22 am

there is a tread on thyroid and MS--possibly this topic should be there? since it is listed as related?
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Postby jess » Wed Dec 16, 2009 10:28 am

does anyone know if dr ann cross at wash u st louis is looking at ccsvi :roll:
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Postby carolsue » Thu Dec 17, 2009 11:35 am

I first noticed my Raynaud's about 3 years before my first MS symptom. I have it pretty regularly throughout the cooler months. Ironically, the shoulder seasons seem worse than winter; perhaps because I don't dress as warmly.

Jimmylegs, I take my Ca/Mg supplements but not Zinc (yet...I've been meaning to...).

I have a nonMS friend who claims "bodytalk" treatments from his osteopath have eliminated his Raynaud's.
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Postby jimmylegs » Thu Dec 17, 2009 3:26 pm

don't think we'll be hearing from NHE on this oh well!
cs, hope u can get some zinc in there :)
as for placement i would call this a general discussion topic..
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