Visible effects of CCSVI, simple at home test

JSTCD · Getting to Know You... Joined: Nov 22, 2009 Posts: 11

I'd like to get a better idea if this CCSVI thing is real or not, but faster than years from now. I have a simple do it at home test that should show if CCSVI is real or not. I hope you can help me.

Basically, having impaired flow out of the head won't only show up as MS, it should also have visible effects, namely:
When my wife does exercise, her head turns red, she has MS.
When I exercise I get more evenly flushed, I do not have MS.

So basically what I'd like to aks people is this: When you (and/or your friends) exercise does your head get significantly redder than the rest of your body?

I would like to see if this is true for a large number of MS sufferers but not non MS people, or not.

Note: exercise can exacerbate MS. Do not exercise until your head/brain explodes. Ideally answer this question from experience/memory.

If your head gets significantly redder than the norm, from other causes (heat, stress etc) I'd love to hear about that too.

CRHInv · Posted: Sun Nov 22, 2009 9:00 am Post subject:

Yep, my head used to turn red. I just went and saw Dr. Dake on the tenth. I ran a mile a couple of days ago, and nope, my head did not turn red. I had some other issues with the recent procedure and the running, so I can't retest this for a while, but I am dying to!!

Does anyone else turn red, like really red, when they eat spicy food? I get really red and my head sweats.
_________________
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!

ozarkcanoer · Posted: Sun Nov 22, 2009 9:33 am Post subject:

I get this condition I call "hot-head". I don't even have to be exercising. It comes on slowly or quickly as the day progresses. I have tried to explain this to my neurologist. He just gave me one drug after another. I become so emotionally distressed by this because I feel like I am going crazy. I put ice packs all over my head and cry uncontrollably Crying or Very sad

.

I have been told by several psychiatrists that I have an anxiety or panic disorder. NO !!! I have CCSVI !!!

whyRwehere · Family Elder Joined: Oct 04, 2005 Posts: 776

We have actually discussed this before, and I would say it seems quite common in Msers...you would have to search for that other thread.
Here it is: http://www.thisisms.com/ftopic-7240-days0-orderasc-red-15.html

Boreas · Family Member Joined: Aug 18, 2009 Posts: 48

yes, the "redhead" thing has been with me all through my life and this condition is exactly what made me believe in the ccsvi-theory first moment I heard about it Embarassed

ErikaSlovakia · Posted: Sun Nov 22, 2009 11:32 am Post subject:

I was always the only one who was red in face during the training of playing handball when I was only 12, I was the only one with really red face at school during the gymnastics classes. On the other hand I was never sweating as the others. I thought it was normal.

I am still not able to test it now because even after short physical action my muscles on the legs get really weak and I am almost on my knees.
I promise I will train little by little.
Erika
_________________
LUCKY GIRL, Aug. 7, 09 Doppler Ultras. made by Dr. Simka in Poland, left Jugularis valve problem, RRMS since 1996, EDSS 5,5, Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, IBT-for 3 months, never on DMDs

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 1115

CureIous · Posted: Sun Nov 22, 2009 12:50 pm Post subject:

I just asked my wife, she said other people used to comment on it about me and my face used to appear flushed. Of course multiply by x when exercising or out in the heat.

As I posted on here about my outside exploits post-op in the heat, it FELT like my face was hot and flush from working outside, but when I ran in to look in mirror, no redness at all! Just hot and that's okay it was hot! lol. Great poll btw...

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

pamf · Newbie Joined: Nov 11, 2009 Posts: 9 Location: UK

This is interesting, because I have this problem. I used to go to a gym at lunchtime. I'd return to my office with a tomato face and pray that no-one came by until it had calmed down (my boss invariably did). I have frequently felt very embarrassed about how red my face goes when I exercise (which I guess doesn't help!).

NancyLebovitz · Newbie Joined: Nov 23, 2009 Posts: 2

I got this link from http://www.blog.sethroberts.net/2009/11/23/breakthrough-in-treating-ms/#comments Seth Roberts, and I was wondering if you'd like me to post your survey in http://www.nancylebov.livejournal.com my livejournal to get a larger sample of people who don't have MS.

skydog · Posted: Mon Nov 23, 2009 10:09 am Post subject:

JSTCD Add a line ? Used to get red faced as many of us post stenting no longer have that issue. Cheers, Mark
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Plant a BIG Garden Live in the Moment

cheerleader · Posted: Mon Nov 23, 2009 10:14 am Post subject:

yeah...I dunno. I get tomato face, and don't have MS and Jeff doesn't get red and he has MS. But he had serious heat fatigue before getting stented. I think we have to be careful looking for outward "signs". Iron deposited in gray matter in the brain and demyelinating lesions is a pretty clear sign something's messed up. And now Dr. Zamboni has given us a reason why.
cheer
_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

skydog · Posted: Mon Nov 23, 2009 10:25 am Post subject:

Your absolutely right here Cheer. I used to and still may get the red face on and off. Now my wife is a veritable color thermometer. Pink to Red cheeks when warm and blue when cold. Its the Swedish blood that runs in the family. Cheers, Mark
_________________
Plant a BIG Garden Live in the Moment

JSTCD · Getting to Know You... Joined: Nov 22, 2009 Posts: 11

Thanks so much everyone for your feed back so far. I hope people will continue. Certainly I have no problem what-so-ever with people referencing or posting links to this study etc.. The more people we can get to take this survey, the more certain we will be of the results. We are certainly short of non-MS respondents.

Combined with another post I did on another site, so far,
of people with MS:
26 with red-head, 8 without. That's 76%. Wow, I never thought it would be THAT prevalent. You have to figure at least some people with CCSVI, won't have red-head, so 75%, wow. Already a combined 34 people with MS have answered, compared to 65 in the original Dr Zamboni study, so this study is already half as big!! In just one day, and with no funding to boot!!

My original worry was that given that Dr Zamboni is just one guy, what if he's wrong. I think we have now already gone a long way towards showing that he is in fact correct.

And it would seem that my super cheapo easy do it yourself at home test might actually work. Good thing because I doubt I was going to be able to get a hold of a Transcranial Color-Coded Doppler Sonography Machine. Well maybe for xmas. If we're lucky maybe the day will come when gym teachers take their class for a run and report back this sign, and children might actually recieve MS treatment before they even get sick.

Clearly over-red-head isn't the best diagnostic tool, but it is the cheapest, and it is potentially a sign of something cardiovascularly wrong. If 75% of MS patients can plainly SEE this, then surely CCSVI is even more prevalent.

The next step is going to be the battle to get CCSVI medically accepted. especially so here in Canada, where I suspect no one gets to be treated or even tested until the goverment comes around (Thanks to the Canadian MS Scociety for recomending no-one get tested, I can't imagine the pain, suffering, deaths, and horrible disfiguring injuries we have prevented by stopping ultrasounds. If they had instead simply written "talk to your docter, and see if testing is right for you" this battle would already be over)

This survey will be one step in the march towards accepting CCSVI as truth. I hope as many people take it as possible. It says, "not only is CCSVI real, but you can see it with your own two eyes!!", not years from now, but right now. I hope you will spread the word!!

NancyLebovitz · Newbie Joined: Nov 23, 2009 Posts: 2

http://nancylebov.livejournal.com/375645.html

All my replies were from people who don't have MS. Four of them have heads that turn red during exercise, seventeen don't, so it's just about the reverse of the proportions you got from the survey here.

There was some discussion of how skin color plays into whether you can see flushing, and whether it's red for people who have somewhat dark skin.