This Is MS Multiple Sclerosis Community: Knowledge & Support

Someone please help!

So were they following Dr. Haacke's MRV protocol for the Buffalo study? If not, what was different?

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If you can't explain it simply, you don't understand it well enough. - Al Einstein

The Buffalo study used doppler and transcranial doppler, similar to Dr. Zamboni- but equipment from another manufacturer. The Haacke protocol studies are using 3T MRV.
The numbers are going to vary depending on screening technique, testing population and operator experience. The important fact is that there is a correlation that needs to be further investigated.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

very positive read, puts things into perspective a bit more..........

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Anyone notice that the CCSVI workshop was updated today?

Here they say Buffalo on 500 patients: found CCSVI in 55% with MS against 22% of "healthy control subjects" - hu, so they also found it in non MSers?

Researcher 'cautiously optimistic' about early results of MS study
(CP) – 9 hours ago
http://www.google.com/hostednews/canadi ... lWEAgfVkvw

I would agree with these statements - I think it might very likely be a combination of factors leading to MS symptoms (vein + neurologic + genetics/environmental):

"But I don't think anybody's claiming that CCSVI is the cause of MS," he said from Hamilton. "I think there's going to be more than just that. ... I think autoimmune components and CCSVI and probably some things we haven't yet discovered may all be part and parcel of the etiology of the disease."
..."If Zamboni's right - and that's what we're all trying to prove - then some people may very well benefit from having his surgical intervention," he said. "I don't think it will be every MS patient," but even if a quarter of people with a certain category of disease could be helped, "that's still an unbelievable opportunity."

The BBC is less optimistic...but if they ask the MS society on their views...

BBC: Brain blood vessels clue to MS
The abnormality was found in 56.4% of MS patients and also in 22.4% of healthy controls. The MS Society said it was intriguing but not proof that this caused MS - as one leading expert claims.
http://news.bbc.co.uk/2/hi/health/8509106.stm

And here the Buffalo study results doc:

UNIVERSITY AT BUFFALO - N E W S R E L E A S E
First Blinded Study of Venous Insufficiency Prevalence in MS Shows Promising Results
Release Date: February 10, 2010

Reports slightly different on the outcome !

=> "More than 55 %...were found to have the abnormality...When the 10.2 percent of subjects in which results were border line were excluded, the percentage of affected MS patients rose to 62.5 percent, preliminary results show, compared to 25.9 percent of healthy controls."

http://www.bnac.net/wp-content/uploads/ ... _ccsvi.pdf

Found link via this article:
http://www.wheelchairkamikaze.com/2010/ ... ealed.html

hi guys,

if we are not talking workshop any more please posts buffalo study chat under buffalo study topic
http://www.thisisms.com/ftopict-9959.html

and any new CCSVI media coverage under
http://www.thisisms.com/ftopict-10212.html

the main thing i'm waiting to see updated here is that the video link has gone live at http://www.mrimaging.com/category.80.html

i can't just move posts around from topic to topic under CCSVI, it's very cumbersome to organize cross posting.

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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

I did not want to initially react to the announcement from BNAC with the statistics from their Phase 1 study until it was better analyzed. An article from the Canadian Press disseminates the numbers better which I believe more accurately reflects the more positive outcomes. As I could not get a link, I've had the editor of the local newspaper send me an electronic version to post. Here it is.

HEALTH: Common among patients is a narrowing of the veins that drain blood from the brain

Possible MS risk factor revealed
Preliminary results from a study show a significant proportion of multiple sclerosis patients have a narrowing of the veins that drain blood from the brain, a condition that's been suggested as a possible risk factor for the debilitating neurological disease. The study by researchers at the University of Buffalo is being conducted to test a controversial hypothesis by Italian vascular specialist Dr. Paulo Zamboni that "chronic cerebrospinal venous insufficiency," or CCSVI, is an underlying cause of MS. Zamboni, a professor of medicine at the University of Ferrara, has suggested that restricted blood flow could damage brain tissue and may be one cause of MS. In experimental surgery dubbed the "liberation procedure," he has used balloon angioplasty to clear blockages in the veins of 65 patients. While his theory flies in the face of the long-held belief that MS is an autoimmune disease, in which immune cells attack the myelin sheath around nerve cells, some neurologists believe it is at least worthy of investigation. Dr. Robert Zivadinov, principal investigator of the University of Buffalo study, said he's "cautiously optimistic and excited" about his team's preliminary results. Using Doppler ultrasound imaging on 500 people enrolled in the study, the scientists found that about 55% of those diagnosed with MS had narrowing of the extracranial veins, compared to 22% of healthy control subjects. When the researchers excluded 10% of subjects whose results were considered borderline, the proportion of MS patients with the venous abnormality rose to 62.5%, and the proportion of controls to 26%. "So this is a huge statistically significant difference between the two populations, almost three times higher prevalence," Zivadinov said Wednesday from Buffalo. The researchers also found fewer cases of CCSVI in patients who had experienced a single MS attack, called clinically isolated syndrome, compared to those with more advanced symptoms of the disease --38% versus about 80%. Zivadinov, head of the Buffalo Neuroimaging Analysis Center at Buffalo General Hospital, said this suggests CCSVI could be linked to progression of MS. But he conceded his data do not offer proof of progression because the study looked at individual patients at only one point in time. A subsequent study is planned that would follow patients over time to see if venous insufficiency advances as their disease worsens. He said more in-depth results from the current study will be presented in April at the annual meeting of the American Academy of Neurology in Toronto.

here we go with dr Dake's presentation in Hamilton... with some BEAUUUUTIFUL shots in it
Michael Dake's talk

or try here: http://www.ms-mri.com/news.php

Are others having trouble reading page 7 of Hamilton? It's huge on my screen & I can't read it withought losing the right or left sides.

Is is just me?

Can I fix it? The other pages are OK

Thanks

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Kat

I'm having the same view problems.

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"A journey of a thousand miles begins with a single step." Lao-Tzu

nice that some ppt and pdf files are up so far

_________________
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

and Simka's presentation is up also ...

So it's officially 95% for Simka.

Just sign me, Baffled by Buffalo.

I know everyone is confused by the 62% found by the Buffalo study ... so let me try to do my EASY statistical analysis for you all (I was a math major in college so I can possibly explain some things).

Simka is treating MS patients with CDMS ... they know where their MS lesions are ... he has a better starting point to know WHERE to look. SO it IS possible he can find CCSVI in 95% of his patients.

Buffalo is treating CDMS, CIS, and healthy controls ... they have no idea where to look going in. People are at different stages of disease progress (and if CCSVI is related to disease progression - as has been implied by Zivadonov) then if more people EARLY in disease progression (as signaled by the RRMS group being SIGNIFICANLY higher in the Buffalo study) ... it would make it HARDER to find CCSVI in those patients as their stenosis might be (like RRMS) remitting from time to time - where later in a disease course it might be more like that all the time. SO he might have only found 62% to have definite CCSVI - in a blind shot. But likely a significantly higher number HAVE CCSVI and they just weren't able to LOOK, were using OLDER equipment, and WERE testing people relatively newer to the disease!

So don't be discouraged. The actual percent who have CCSVI is most likely SIGNIFICANTLY higher than the 62% reported ... but going in blind makes it harder to find.

Anyway, I know you all want answers ... but that should clear things up a bit. We were hoping for 90+% but that was really unrealistic.

Once they develop better equipment/testing/etc ... you'll see those numbers in the 90+% range ... mark my words. CCSVI just makes too much sense ...