Visible effects of CCSVI, simple at home test

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

Does you head get redder than your body when you exercise?

Yes-my head turns red, and I have MS
51
60%
No-my head doesn't turn red, and I have MS
26
31%
Yes-my head turns red, and I do NOT have MS
6
7%
No-my head doesn't turn red, and I do NOT have MS
2
2%
 
Total votes : 85

Postby dlb » Wed Nov 25, 2009 8:49 am

OMG.... For years people assume that I have high blood pressure because I get so red in the face. In fact my blood pressure is enviably normal (doctors always comment that I have the blood pressure of a 20 year old). Nice to know that something is right!! I don't need much exercise to become flushed or warmer weather
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Postby Algis » Wed Nov 25, 2009 8:54 am

I know it's not gonna help; but:

I just cant exercise... Because I cant anymore... The hardest I do is typing this post...
If exercising is the transfer bed-wheelchair - yes I am red - But mostly because I hold my (now short) breath - or that is what I observe...

Would you like me to try something? I am open and I have all the time on earth now...

Cheers!

Algis
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Thanks to Nancy Lebovitz

Postby JSTCD » Wed Nov 25, 2009 1:49 pm

Thanks Nancy for posting this on your other site.
We got some great data from people without MS.

Combined poll so far:
MS YES : 34 ( 79% of MS total )
MS No : 9
NoMS Yes : 6
NoMS NO : 26 ( 77% of Non MS total )

77% did NOT have red-head compared with 79% with MS who do.
While the 23% non MS -red head numbers are more than DR Zamboni's 0%, remeber that this is a pretty rough test, and it is self reported, so there's lots of room for error.

Still I was a bit worried since on this site NoMS was 2:1 red Head vs not, which would invalidat Dr Zamboni. It's great to have a statistically significant amount of data.
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Postby CureIous » Sat Feb 13, 2010 9:39 pm

Sorry, couldn't resist resurrecting this thread to correlate with this tidbit from Dr. Simka's prelim results:

Some interesting findings
•Within one hour postop patients’hands became warm (if cold before treatment) and faces pink (if pale before)


I know that and a buck fifty will get a small Starbucks, but still.....

:)
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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Postby Dovechick » Sat Feb 13, 2010 10:38 pm

How about another test? Absolute opposite to red face... How about blue feet? Ella has MS and I can't say that I have ever noticed her face being red after exercise, but I certainly have noticed her bue legs and feet, associated of course with the unshakeable coldness. Apparently, the first thing Dr Ludyga does after completing the Liberation treatment on a patient is feel their feet. Most patients that I have heard comment say that warm feet is the first improvement they notice.
Another sign of CCSVI that I read about somewhere are thread veins in the face. Ella is only 30 so by rights should still have nice clear skin, but in the past couple of years thread veins have appeared on her cheeks.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby civickiller » Sat Feb 13, 2010 11:50 pm

nobody has ever commented to me that im redder after excersising than my twin brother who doesnt have ms but we are from hawaii so we have darker skin which makes it harder to notice a redder face. but when i lift weights my training partner says my faces gets really red

as for the feet thing, everyone i know that touched my feet say i have the coldest feet they felt before, and one person that has felt my feet a couple of times say that my feet are cold everytime
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Postby L » Sun Feb 14, 2010 12:34 am

CRHInv wrote:Does anyone else turn red, like really red, when they eat spicy food? I get really red and my head sweats.


I love spicy food! I am addicted to it. The very hottest curry at any curry restaurant is the one that I'll order. Usually a phaal (I think it was invented in Bradford, not so authentic. There is a hotter curry they call the 'Tindaloo' but my local place refused to cook it saying that I may as well eat raw chillies.

I have always thought that my compunction for spicy food was something to do with its vasodilating effects. When I first heard about CCSVI I didn't get my hopes up but this was one little thing that seemed to me to be explained by the theory. This and my odd feeling of well being after spending time at transatlantic, very high altitudes.

Anyway, back to the subject. I don't get red when I exercise, not at all and I don't get red when I eat spicy food, although it's not unusual (again the vasodilating effect of chillies).
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Postby whyRwehere » Sun Feb 14, 2010 1:53 am

My husband's feet are white and ghostly and cold.
This is even after what treatment could be done.
I feel he reacts badly to the chili pepper in food I make for him. I do it occasionally, because he likes it, but he seems the worse for it, if tingling is a bad sign.
He would go red on exertion, but we haven't tested this since the angioplasty.
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Postby AndrewKFletcher » Sun Feb 14, 2010 3:37 am

Results from the poll are inevitably going to be weighted towards people with ms on an ms forum. Difficult to get a picture of non-ms votes.

I voted yes my head and face turn red during exercise. Why wouldnt it? :oops:

Also as pointed out darker skinned people may not readily notice the same colour changes.

Andrew
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Postby Billmeik » Sun Feb 14, 2010 6:41 am

man do I feel like a downer when I say that docs have measure intracranial pressure for years and MS people don't have higher blood pressure in their heads than others. It's the first reason red flags go up when they hear about ccsvi. So ms people wont have redder faces than others either. My guess is that this thread is spreading folklore. I think it is true that a lot of ms people are not so fit physically so get flushed....
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Postby Lyon » Sun Feb 14, 2010 6:51 am

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Last edited by Lyon on Mon Nov 21, 2011 6:26 pm, edited 1 time in total.
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Postby CureIous » Mon Feb 15, 2010 7:26 pm

Who says the red face may or may not be caused by higher pressure alone? Parkinson's sufferers get red faced too. Some neurological problems are KNOWN to cause "red face", which in our minds of course is akin to the look one gets when holding one's breath, but what about dilation? Look at Simka's comments re: angiotensin, which increases BP. Perhaps it is transient in nature. Perhaps it affects different people in different ways, just like CCSVI. Perhaps not everyone will show such obvious, outward physical signs.

I doubt anyone on earth considers this a scientific website, scientific minded maybe, but we're not college professors arguing complex principles here, just talking is all. Sure, we all know plenty of people w/o MS who get "red faced", and red faced doesn't in my mind equate with good, bad, or otherwise, but the unscientific poll above is interesting nonetheless, so we discuss.

M.
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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Postby L » Mon Feb 15, 2010 8:46 pm

Billmeik wrote:man do I feel like a downer when I say that docs have measure intracranial pressure for years and MS people don't have higher blood pressure in their heads than others. It's the first reason red flags go up when they hear about ccsvi. So ms people wont have redder faces than others either. My guess is that this thread is spreading folklore. I think it is true that a lot of ms people are not so fit physically so get flushed....


Zamboni observes an outgrowth of veins to relieve pressure, veins which relieve pressure but do not prevent reflux, that's how he explains the question of intracranial pressure. But perhaps you knew that anyway. I don't know how that might relate to redness after excercise but I thought that I'd point it out all the same..
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Postby lilsis » Mon Feb 15, 2010 10:31 pm

non-ms: 33 female, fairly fit and healthy but get very red in the face and sweat profusely during and for a time after strenuous exercise. always received comments from others regarding this.

my sister has ms and there is also diabetes in the family, i've been following ccsvi and iron toxicity very closely.
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Postby CureIous » Mon Feb 15, 2010 11:13 pm

lilsis wrote:non-ms: 33 female, fairly fit and healthy but get very red in the face and sweat profusely during and for a time after strenuous exercise. always received comments from others regarding this.

my sister has ms and there is also diabetes in the family, i've been following ccsvi and iron toxicity very closely.


People with TMJ get it too, which is interesting in light of how many MS'ers talk about TMJ and jaw issues as an adjunct. I've had people remark to me the same thing, long before any dx of MS, usually in periods of intense stress and/or exertion. Not something the average Joe would make a journal entry out of or find particularly noteworthy, but the 20/20 hindsight vision is once again, perfect! :) I have diabetes on both sides too. I think 3/4 grandparents and several great grandparents, Mother and Father too. Too bad they (the mysterious "they") can't do a full history on all 500,000+Ms'ers in the US....

Mark.
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