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80% for CDMS - It's Real

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JoyIsMyStrength

Post subject:

Posted: Fri Feb 12, 2010 3:11 pm

Family Elder

Joined: Fri Jan 01, 2010 4:00 pm
Posts: 164
Location: US

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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eve

Post subject:

Posted: Fri Feb 12, 2010 3:24 pm

Family Elder

Joined: Tue Jan 05, 2010 4:00 pm
Posts: 117
Location: Netherlands

Hello, happy mood!

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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Shayk

Post subject: Data on Conversion of CIS to CDMS

Posted: Fri Feb 12, 2010 6:03 pm

Family Elder

Joined: Fri Feb 06, 2004 4:00 pm
Posts: 750

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

Quote:

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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Cece

Post subject: Re: Data on Conversion of CIS to CDMS

Posted: Fri Feb 12, 2010 6:10 pm

Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8556

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.

_________________
"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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Billmeik

Post subject:

Posted: Fri Feb 12, 2010 6:15 pm

Family Elder

Joined: Fri Nov 27, 2009 4:00 pm
Posts: 691

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

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Cece

Post subject:

Posted: Fri Feb 12, 2010 8:10 pm

Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8556

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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Billmeik

Post subject:

Posted: Sat Feb 13, 2010 7:46 am

Family Elder

Joined: Fri Nov 27, 2009 4:00 pm
Posts: 691

so what article mentions this? I thought it was just something a reporter heard from Ziv ?

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Billmeik

Post subject:

Posted: Sat Feb 13, 2010 8:13 am

Family Elder

Joined: Fri Nov 27, 2009 4:00 pm
Posts: 691

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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fiddler

Post subject: Article

Posted: Sat Feb 13, 2010 9:02 am

Family Elder

Joined: Wed Dec 02, 2009 4:00 pm
Posts: 398
Location: Fredericton, Canada

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.
...Ted

_________________
Dx SPMS in 2004. Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

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Billmeik

Post subject:

Posted: Sat Feb 13, 2010 9:39 am

Family Elder

Joined: Fri Nov 27, 2009 4:00 pm
Posts: 691

thanks for looking it up '

Quote:

√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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fiddler

Post subject: Degree of Improvement

Posted: Sat Feb 13, 2010 10:01 am

Family Elder

Joined: Wed Dec 02, 2009 4:00 pm
Posts: 398
Location: Fredericton, Canada

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.
...Ted

_________________
Dx SPMS in 2004. Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

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scorpion

Post subject:

Posted: Sat Feb 13, 2010 10:32 am

Family Elder

Joined: Wed Nov 05, 2008 4:00 pm
Posts: 1323

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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fiddler

Post subject: Sorry, scorpion

Posted: Sat Feb 13, 2010 11:53 am

Family Elder

Joined: Wed Dec 02, 2009 4:00 pm
Posts: 398
Location: Fredericton, Canada

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.

...Ted

_________________
Dx SPMS in 2004. Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

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TFau

Post subject:

Posted: Sat Feb 13, 2010 12:10 pm

Family Elder

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 222

scorpion wrote:

You have quite an appropriate nickname.

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Billmeik

Post subject:

Posted: Sat Feb 13, 2010 12:49 pm

Family Elder

Joined: Fri Nov 27, 2009 4:00 pm
Posts: 691

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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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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