This Is MS Multiple Sclerosis Community: Knowledge & Support

I'm wondering what people think about any connection with CCSVI? I've noticed that several of us on the site have referenced having discoloration and/or Raynaud's. It's something I intend to speak with Dr. Dake about, but it would be great to hear if others have these issues in their hands and feet and what might be going on.

Raynauds is a spasm of the artery so that blood can't get into fingers or toes sometimes even a whole hand. THe area looks white then eventually possibly bluish from lack of O2.

Venous insufficiency may leave feet, if you have blockage in a vein, kind of red and eventually puffy, and or a orangey/tan discoloration around the ankles.

THese are really different diseases of the blood vessels, one arterial one venous.

That having been said there is also neurogenic vessel issues meaning because your brain is whacked you are not constricting your veins or moving your muscles to help venous return so you have circulation problems in the feet like red feet and puffy ankles. ANY person who does not walk has circulation problems in the legs. You need those muscles to move to get the blood back, the body is set up that way. Consequently all people with no muscle function have issues with this.


I have raynauds it was very well helped by antibiotic treatment. Hate to throw that in because it seems random but that is true.

I also think thereis some coagulation issues that may be connected so far there is no hard and fast on that, but there you go...
marie

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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

My feet would turn purple when I wear high heels. It used to freak people out and they would point to my feet and I would just laugh, mainly because I was used to it and I knew the color would return.

I haven't had that happend since I moved to texas, but happened all the time in Colorado.

hello guitar woman

my feet turn purpele as well and i not only believe that it is caused by CCSVI but lack of exercise/circulation as well. If I am messaged, the color goes back to normal what ever normal is...for a short period of time. Since my stents I've been watching this effect and I think there is some relief but not worth reporting at this time. I do not have vericose veins.

Oh they turn purple bare footed. I live in high altitude like you...5500ft high. I'm not sure of the long term effects of it. I would think that our marvelous bodies adjust after a certain time. just like we do the temperature.

Spasms as marie suggests? I am not that aware to know the difference

One advantage of the walk aide is that it improves circulation by means of flexing the muscles for you, which automatically returns blood and improves tissue health...it is one of the things that helps them get insurance and medicare coverage

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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

About a yr or so ago I contacted Walk-aide and they told me no beans ..expecially /w SSDI have things changed? H

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Correct me if I am wrong but I understood the code given was for spinal cord injury in patients who were ambulatory. Bioness has the same medicare clearance. As far as I know it has snot been approved for MS for either one...though I understand apparently other insurance has sometimes covered it, they said at Hangar it was not assured at all.

I don't believe my insurance said yes.... I stopped pursuing it after I knew I was going to Stanford. I will not start again until the stanford bills are cleared

Has anyone seen specific clearance for MS?

frankly it should be coming.

_________________
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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magnesium is known to help relax spasms. i have heard of two members here at tims that started mineral supplements for their ms and reported that their raynaud's cleared up. i have recommended magnesium to a co-worker with raynaud's and i will report back if it clears up for her also. she has a bottle of 300mg magnesium citrate and is starting on one per day for the time being. i told her to be careful about taking a second, because it can give you the runs if the dose gets high.. for me personally 750 a day is too much.

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

My Raynaud's Syndrome is clearing up incredibly quickly--after years of discomfort. First started to clear after a month or so of Inclined Bed Therapy, when started to get feeling in feet and hands that hadn't had for years, and a bit of normal color--and then the super fast clearing with Magnesium infusions started a few weeks ago--after first infusion, the feelings were intense, and so I also started with Mg capsules also (had for years been taking Mg citrate--clearly did not work)--the new capsules I use (after research) are a chelated form of Mg, chelated with the Albion Process (only 3 companies use this, Doctor's Best, Carlson, and Solgar)--and each time I take it, can feel a bit of tingling in hands and feet. I take 900 -1200 mg per day--no diarrhea at all. You get diarrhea from other forms, where the chelation is not complete--witht the Albion, it is complete. I also still continue with the Inclined Bed Therapy.
Now, with ski gloves on, can feel the cold, but it takes hours in the cold to feel frozen--before, with ski gloves on, would quickly just totally freeze up to point could not use hands, and then the freezing would travel slowly thru rest of me. Clearly, my circulation is going into recovery!

that's great that you got the right form shye. i will look into that locally and mention it to my co-worker too. i'd love to take more without paying the price LOL

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Sorry, I can't help it.

guitarguy,

Maybe I have this wrong, but maybe "they" pointed at your feet because you are a guy wearing high heels?...

Grin.

I don't have any real problems with circulation - other than me hands get numb (but not discoloured) below about 65o Fahrenheit. Else, I have warm hands and feet, but I have been having issues in one leg with CVI (the beginning of venous ulcers on the ankle), and have started both pycnogenol (two months ago) and green tea extract one month ago ((ECDG, or whatever the acronym), and seem to notice changes (improvement, perhaps).

I am sure that the CVI (Chronic Venous Insufficiency) is related to my undiagnosed CCSVI (MS).

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My name is not really Johnson. MSed up since 1993

I have Raynauds also... just wondering how many of us with MS have it. Wish they would add this question to the poll.