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After I watched the YouTube video from Kuwait, and he showed pictures of people with purple legs/scabs due to poor circulation, it prompted a question. In the morning, after I have been laying down for a long time, my feet are normal, they are pink and not swollen. During the day they get quite discolored, very purple, sometimes my toes are so dark they look black. I am wondering if this is an indication of just how severe blockages might be... considering that many people say their feet return to normal after CCSVI. Does being supine somehow open up the veins so that the blood can flow better? I am very very debilitated and I can't even figure out a way to have the Doppler ultrasound etc... traveling has been logistically impossible for quite a while... anybody else in this boat? Where they can't even figure out a way to make a trip outside the country?

hi merlyn, i posted in detail in the early days of the CCSVI forum here at TIMS, regarding regular venous insufficiency affecting the legs and feet, as a possible linkage to the CCS variety of VI.

i have trouble linking straight to that post - some kind of glitch i think - so i reposted it to my regimens thread in case you'd like to check it out:
http://www.thisisms.com/ftopicp-140188.html#140188

following my usual approach of searching for research on nutritional links to conditions, zinc came up time and again. unfortunately, i recall that you have not had success working on your zinc deficiency (10.9 umol/L) but i hope you will continue to try to get it up into the high teens.

i know you said that high zinc intake messes with the immune system but it's the same problem at both ends of the scale:

http://jn.nutrition.org/cgi/content/full/133/5/1452S
"High dosages of zinc evoke negative effects on immune cells and show alterations that are similar to those observed with zinc deficiency... Zinc is necessary for the normal function of the immune system (6, 12). Even mild zinc deficiency, which is widely spread in contrast to severe zinc deficiency, depresses immunity of humans (13).
...the optimal therapeutic dosage that is required to reverse symptoms of zinc deficiency is still unclear, and the pharmacologic zinc dose should be adapted to the actual requirements to avoid negative side effects on immune functions. Therefore, zinc plasma levels should not exceed 30 µmol of zinc/L...
Different groups report suppression of immune functions when the oral zinc intake is 100 mg of zinc/d (62– 65)."

you'd only want to take amounts that high on a daily basis for a short time to address deficiency. in 2007 when i got my 8.6 umol/L level, my doc said take 100mg/d for a month. it made me nauseous so i had to break up the dose through the day and it worked. i took it for a bit too long and went up just over 20 at one point (panicked since i did not know about the 30 umol/L limit then).

also... not sure if you're still considering/doing the IP6 thing but that will knock your zinc down quite handily too.. standard diet has too much phytate as it is, leading to a general societal suboptimal zinc status...

Yes, my purple feet (pre-procedure; they disappeared at once following liberation) showed up when I had been standing or even sitting for any length of time - say, in the shower. Not walking or exercising, and NOT when I had been lying down.
This had been true all my life; a doctor friend told me a quarter century ago it was nothing to worry about; my feet were still getting new blood, but the old blood was just hanging around too long before making it all the way back up.
When I was lying down, or exercising my legs, no purple feet; it was easy for the blood to get back up. Well, I'd worry about now after the problem went away so quickly and immediately.

Merlyn, if you're in Canada, is it possible you could get to Barrie Vascular Imaging for U/S testing? Is is physically impossible for you to take the bus or fly to the United States or is it (and I understand this!) financially impractical?
-d

jimmy legs, do you or did you have the purple swollen cold feet? if so, did the zinc help that?

i sound like merlyn. same thing when i get up my feet are warm pink and not swollen. my feet actually warm up quicker when i incline my bed.

i am pretty disabled but i did get liberated in albany. my feet and hands did warm up for a few weeks but they still were purple and would swell. i am in wheelchair full time and my hands getting pretty bad.

Sounds like your feet are receiving adequate drainage only when you are supine. It would be tempting to say your jugulars are involved, because they work mainly when you are supine. However the whole system changes, because pressure is driven by gravity when you are upright. Your heart is involved too, and it is probably much easier for it to get blood from the feet when it is not working against gravity.

Your heart may be weak and have a hard time, especially when it is tired out after a long day of standing or sitting. The muscles help to get blood up to the heart too, so walking is good, even though feet may feel it more. I can't walk, but I try to use a recumbent elliptical when I can. I have to bungie my left foot onto the pedal, but it still works.

If you have jugular stenosis as well as drainage issues lower down, even when lying down your feet and your brain may both have insufficient drainage. Having it ballooned may help your brain but maybe not your feet. Warm hands maybe come merely from an improved circulation, regardless of how you achieved it. I think a doctor like Drs. Mehta or Sclafani would know a lot more about it than I do.

My husband is like blossom; he had treatment which resolved jugular blockage, but no improvement really, and his feet are still purplish, when they aren't white as a ghost. He also improves lying down, presumably because his jugulars are working now. His feet get warm, he feels better.
The IR believes it is caused by his missing veins in the sacral plexus. Could be, but maybe also is the poor flow through the vertebral veins when he stands. Very frustrating.

hi blossom,

no things have not gotten that far with me yet. i asked for the zinc test only 2 years after diagnosis.

what zinc deficiency did to me was make me very sensitive to eating bread, also i had some *bad* cognitive issues and found it quite hard to drive, and finally i had an open wound that wasn't from an injury and didn't heal for over a year. i think it must have been a zinc deficiency parakeratotic periorificial lesion.

all those problems resolved entirely, once i identified and corrected my zinc deficiency.

zinc is involved in just about every biochemical pathway in the body so if you take 100 people and put them on a low zinc diet it will probably manifest in a wide variety of ways.

also, i think the longer a situation is left untreated the harder it is to correct.. b12 is my longest standing nutritional issue, i did some permanent damage to my spinal cord because of it, and my sensory disability in my hands has resolved to as good as it is ever going to be. they feel wonderful compared to just after dx though!

I had swollen, purple feet especially my left. It was impossible to put a shoe on it. 5 hours after the procedure the swelling and purple feet were now normal. I restenosed about a week later and the swollen, purple feet returned. And with the second procedure again my feet became normal 5 hours later.

i had the same problem. i have not been liberated. my doc told me to wear compression socks. the socks are WONDERFUL. i wear 20-30 weight compression socks.

socks were suggested to us, but there is no swelling, just the coldness and colour. I don't think socks will help that, plus they don't feel very nice.

dania wrote:I had swollen, purple feet especially my left. It was impossible to put a shoe on it. 5 hours after the procedure the swelling and purple feet were now normal. I restenosed about a week later and the swollen, purple feet returned. And with the second procedure again my feet became normal 5 hours later.

Placebo..my aunt fanny congratulations!

PCakes wrote:

dania wrote:I had swollen, purple feet especially my left. It was impossible to put a shoe on it. 5 hours after the procedure the swelling and purple feet were now normal. I restenosed about a week later and the swollen, purple feet returned. And with the second procedure again my feet became normal 5 hours later.

Placebo..my aunt fanny congratulations!

Yup! When I complained to my neurologist (before procedure) of my swollen, purple feet, he told me "that has nothing to do with MS"

.

jimmylegs, you say you had a b12 issue that caused you problems. were you too low or would your body not absorb it? i had some pernicious anemia issues and have takenb12 shots for yrs. along with b complex as i understand you need them all or it doesn't work right. will too much b12 hurt? i understand that it is one of the vit. that what your body doesn't need you pass it. but, i am no specialist for sure.

can your pcp check your zinc levels? i had once done the chelation after silver fillings were removed and the dr. there was a natural dr. i walked out of there with tons of vit.'s etc. did all that for awhile but was costing a small fortune and i don't have a fortune. anyway, what is the best way to get zinc checked and monitored?

god, there is so much it can be overwhelming to the brain and pocketbook.

dania wrote:...he told me "that has nothing to do with MS"

..and he was correct..;) (it's the other way around ..IMHO)