80% for CDMS - It's Real

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

Postby JoyIsMyStrength » Fri Feb 12, 2010 3:11 pm

When I was dx'd 10 years ago, a person with CIS would still be considered undiagnosed. I feel for these people and I realize it's frustrating to be in limbo, don't misunderstand, but I can't figure out how the rules changed for this study. Am I that behind the times?
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Postby eve » Fri Feb 12, 2010 3:24 pm

Hello, happy mood! :D Now I knew those numbers had to be better than 55%. Thank you fo much for your effort to check the source.
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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Data on Conversion of CIS to CDMS

Postby Shayk » Fri Feb 12, 2010 6:03 pm

Hi all

I too was curious about the # of people who converted from clinically isolated syndrome (CIS) to clinically definite ms (CDMS).

In this fairly recent study, fewer than 50% of people with CIS converted to CDMS, so it might make some sense that the Buffalo preliminary results show 38% of CIS people had CCSVI.

Prediction of conversion from clinically isolated syndrome to clinically definite multiple sclerosis according to baseline MRI findings: comparison of revised McDonald criteria and Swanton modified criteria
RESULTS: Thirty patients (46.9%) converted to CDMS.

As I understand it, this was at 2-4 years after the initial CIS diagnosis. More to think about.

Take care all

Sharon
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Re: Data on Conversion of CIS to CDMS

Postby Cece » Fri Feb 12, 2010 6:10 pm

Shayk wrote:As I understand it, this was at 2-4 years after the initial CIS diagnosis. More to think about.


That's a good find. Two to four years, though, may be too short to tell much. I've yet to see a study that says how CIS as a whole does over 15 or so years. The one I dug up in another thread separated it into two groups: CIS with no abnormalities on MRI had a 20% chance of converting to MS in 14 years but CIS with a lesion on MRI had a 90% chance. This doesn't help much, we don't know how many CISers have abnormal vs normal MRIs.
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Postby Billmeik » Fri Feb 12, 2010 6:15 pm

wow this is amazingly good news. So 80% of clinically definite MS patients have ccsvi? Wow.
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Postby Cece » Fri Feb 12, 2010 8:10 pm

Billmeik wrote:wow this is amazingly good news. So 80% of clinically definite MS patients have ccsvi? Wow.


From the way it was originally phrased in the article, I haven't known whether to take it as 80% of clinically definite MS or 80% of clinically definite MS with some set disability score. It's 80% of "more advanced" cases of MS. Whichever way it goes, it was cheering news.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Billmeik » Sat Feb 13, 2010 7:46 am

so what article mentions this? I thought it was just something a reporter heard from Ziv ?
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Postby Billmeik » Sat Feb 13, 2010 8:13 am

Did that reporter publish an article? I'll bet its here but I just dont see the link when I read back through the thread.
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Article

Postby fiddler » Sat Feb 13, 2010 9:02 am

Folks, the article itself is at:

http://www.google.com/hostednews/canadianpress/article/ALeqM5h9fFcp3BUaMrK7YnuZlWEAgfVkvw

I've also added to the first post in this thread. It was also in another thread, where I heard about it in the first place, but you sometimes forget that others didn't see it already. Sorry.
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Postby Billmeik » Sat Feb 13, 2010 9:39 am

thanks for looking it up '
√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 per cent versus about 80 per cent.
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. Phase 2 of the study will examine extracranial veins in another 500 people using more advanced diagnostic tools.



you know there is another possibility. Rather than showing progression of the ccsvi, the fact that worse ccsvi means worse ms, could mean that the congenital ccsvi you've always had (and never changes if the vascular guys are right) can predict how bad your MS will be. This is huge for diagnostics.

Really it's a good one for people with bad MS to hope for because the ccsvi can probably be fixed, so for a change, the worse the ms the more of a change you should feel when the ccsvi is corrected?
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Degree of Improvement

Postby fiddler » Sat Feb 13, 2010 10:01 am

But Billmeik, wouldn't this assume that CCSVI is the ENTIRE problem? The CCSVI theory includes iron in the brain, inflammation and eventual autoimmune problems. Besides, the evidence from Zamboni and Simka (not sure about Dake) seems to be that the more severe the degree of physical deterioration, the less dramatic the recovery. Liberated RRMS patients get most improvement, whereas it is more modest and/or slower with liberated SPMS and PPMS sufferers. Of course, for many of us in the SPMS/PPMS boat, simply arresting deterioration sounds pretty good right now.
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Postby scorpion » Sat Feb 13, 2010 10:32 am

I think you guys have finally done it!!!! You have found a way to manipulate the Buffalo data to meet your expectations of the study!! Why wasn't Zamboni's original study put through this level of scrutiny? The Buffalo study seems to point to some connection between CCSVI and MS but that is all. Further studies will shed more light on CCSVI's relationship to MS but until then we have what has been dealt to us. I am sorry guys but the Zamboni study which began "the movement" is 10x as flawed as the Buffalo study.
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Sorry, scorpion

Postby fiddler » Sat Feb 13, 2010 11:53 am

But I can't take credit for manipulating anything... I'm relaying what was reported in the news media, and trying to make sure that it wasn't a misquote or a mistake. However, if you don't appreciate that, why don't you start a thread with information of your own... but take the time to check your facts before you post it... "10X as flawed" is pretty well meaningless, and doesn't really add anything to the discussion. And since the Buffalo study methodology hasn't been published, how do you "know" it is flawed? Do you have some information that you haven't shared?

It would be really helpful to have serious skepticism. Even unfounded opinion is fine, as long as you are honest that it is only based on a "gut feeling" or whatever. Unfounded opinion put forward as truth isn't of any value.

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Postby TFau » Sat Feb 13, 2010 12:10 pm

scorpion wrote:I think you guys have finally done it!!!! You have found a way to manipulate the Buffalo data to meet your expectations of the study!! Why wasn't Zamboni's original study put through this level of scrutiny? The Buffalo study seems to point to some connection between CCSVI and MS but that is all. Further studies will shed more light on CCSVI's relationship to MS but until then we have what has been dealt to us. I am sorry guys but the Zamboni study which began "the movement" is 10x as flawed as the Buffalo study.


You have quite an appropriate nickname.
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Postby Billmeik » Sat Feb 13, 2010 12:49 pm

really its just word of mouth until we see those 2 number 28% and 80% in the paper. I dont think that happens until April. Perhaps the reaon this data is buried is that it can stir up scorpions.
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