purple feet and ccsvi

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby lucky125 » Tue Dec 22, 2009 9:04 pm

SaintLouis wrote:My feet aren't purple however they are always freezing, as are my hands. Always. I too struggle with anemia and until recently I'd always assumed it was what was causing my cold extremities...but maybe not?


I have always blamed my cold body on anemia, too. But I couldn't explain why they didn't improve when my levels were returned to normal. Now I realize that no Ugg boots, cashmere socks, or fuzzy slippers can protect me from the cold. It is coming from within!

Nice to have a possible explanation, but I'd MUCH rather just have warm feet! :wink:
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Postby Brynn » Wed Dec 23, 2009 10:51 am

Hi Lucky125, I, too, had purple feet with temperature issues! I go to a naturopath and she immediately suggested that I eat 1/2 cup of blueberries every day and then also take a couple tablespoons of fish oil each day. She suggested Carlsson brand because it is well tested for quality. Anyway, my feet went from purple to pink in about three weeks and I see enough improvement to continue with this. Brynn
41 years old, dx 1998, current EDSS 6.5
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cold feet doppler results from nj vascular surgeon

Postby jak7ham9 » Fri Dec 25, 2009 12:55 pm

Ok got my dopler results back from vscular surgeon in new jersey. Surprise I have stenosis and reflux in jugular veins. Surgeon was super surprised and now very interested in research. I am having mrv done by nero-radiologist he contacted and sent all info too. I am still thinking of using exjade until I convince them to do stents, Oh I am positive for one of the hh genes.B
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Postby bestadmom » Fri Dec 25, 2009 1:08 pm

jak7ham9,

Where did you get tested?
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test doc nj

Postby jak7ham9 » Sun Dec 27, 2009 11:33 am

dear best mom
igot doppler ultrasound tested at dr gosin vascular srgeons in somers pt new jersy. both father and son vascular surgeons.my thoght if they put in stents and treat varicous veins why not take a peek at my jugulars.barbara.. igave them all reseach on ccsvi testing from internet
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Postby bestadmom » Sun Dec 27, 2009 3:57 pm

Thx jak7ham9. I'm happy that you found people who are intrigued. That's what it takes.
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purple/chalk white feet

Postby Tooney » Fri Jan 01, 2010 1:46 am

Hello all,

I have been reading this thread with fascination. One of the first areas that I became fixated on prior to an official diagnosis of MS was my feet. I became acutely aware that when I stood on my tippy toes, there was an obvious division of purple/white coloring. There appeared to be no blood flow whatsoever on the upper arch of my feet, yet the toes were distinctly purple. I couldn't seem to find anyone who thought this to be remotely unusual but knew it was. I had been a dancer (informally), but with several years of ballet training and I knew what my feet looked like....and I knew that they had never looked like this on tippy toes. For approximately six years I have been baffled by this division of coloring in my feet. Am anxious to get on with CCSVI , as so many of us are. The numbness in my toes varies from day to day/week to week etc. This has now become one of the more minor symptoms; often trumped by a host of other symptoms; most days it's like walking on a world of balloons with one eye and a numb lower back , jellyfish legs and one half of a frozen face, etc. blah, blah. didn't mean to to on here. It's just that I am happy to have the colorful foot conversation with others for the first time. Thank you for letting me share. I wish the best for all of you. I think this path makes a great deal of sense.
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Postby CureIous » Sat Jan 02, 2010 3:36 pm

Hi all, was going to post a new topic, but since y'all alluded to it here, might as well segway on this thread. I saw the post above alluded to Deferiprone, for the chelation of iron.

Interesting in that the NIH itself, is researching into chelators, (Deferiprone) in the treatment of NBIA, a neurodegenerative disorder involving iron deposition an resultant disability. This disease was recently featured on NBC nightly news. (and keep in mind, it is considered an inherited, genetic disease that requires the same defective gene from BOTH parents in order to manifest!)

VIDEO From Jan 1, 2010
http://www.blinkx.com/watch-video/rare-disease-decimates-family/zXf7XTk89zPHeH2-K2qNAA

These were 3 healthy children, who's systems began depositing iron in the brain. (wonder if they checked them for CCSVI?).

Granted, that some people being treated for NBIA, have HAD the chelation treatment, with limited success, and with the predictable side effect of lowered blood iron levels (anemia). They are definitely on the hunt for methods, pharmaceuticals, or otherwise, to get that overload of iron out of the brain (it's mostly in the basal ganglia for NBIA people), but chelation, bloodletting, leeches, however and whatever method people/doctors use to attenuate the blood iron levels, is going to be stopgap at best.

This is something that comes up continuously on the FB page, and here too, it is a very natural (first blush reaction) to counter the "too much iron in the brain part" with "well get it out of the blood then" and all the various methods of doing that.

I think it's good from time to time to reiterate for the new-to-CCSVI people, that this is just talk here, and in no way should anyone, at any time, take it upon themselves to alter their blood chemistry, blood volume, etc without proper medical evaluation, consultation, and help.

After all, we are just talking ideas here, amongst fellow MSers and the like.

That being said, I hope everyone "gets" how overarching this iron principle is, in it's application towards a whole HOST of diseases, and how research in one area, like this one, can lead to possible palliative treatments for quite a few other diseases. I dunno, like CCSVI for one! Parkinsons, Alzheimers, list goes on.

Dr. Haacke is definitely WAY ahead of the game on this, and the application of the SWI technology, towards not just CCSVI but a lot of other diseases. My sense is that CCSVI has an aura of "correctibility" around it, sure there are kinks to be ironed out, problems and concerns to be addressed, "more studies needed" etc. Hey, they are happening!
Not on a mass scale, but something is moving and keying in iron deposition to MS is going to be a very very important part of what puts CCSVI in the "inbox" of every medical professional in the world.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Purple Toes

Postby Bobbi » Sun Jan 03, 2010 3:37 pm

Yes, I have purple toes from time to time. I wear socks all of the time so no one sees my toes. They go numb and cold and then when stimulated they go pink and hot. I also find that if I get a blister or cut on my toes it takes forever to heal and go away. I also failed the tuning fork test for feeling in my toes.
Doctors have just shrugged their shoulders at it without discussing the issue. One even suggested that it may be from living 'high on the hog'.
I now feel that CCSVI has something to do with purple toes and I'm not the only one with this condition. Thank you for sharing your observations and suggestions.
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Postby IHateMS » Sun Jan 03, 2010 4:41 pm

AS I mentioned earlier, buy support stockings or support socks....... it improves the circulation and the feet will be warm and the color will go to normal..... it is an easy fix (for the purple feet) until you have the ccsvi surgery.

I saw a vascular specialist and he recommended this.
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