Extracranial venous stenosis is an unlikely cause of MS

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

Re: 92% of RRMS patients have EVS after 10 years

Postby CCSVIhusband » Wed Nov 17, 2010 8:16 am

patientx wrote:
MarkW wrote:Yes its a small study but helpful if you read the results, rather than the title and conclusions.
Changing the title of this thread is a good idea, dreddk.


That is a terrible idea. Dreddk, what you posted was the title of the article. There is no need to change it because people don't agree with the conclusions.

Yes, because otherwise we couldn't confuse people looking for information ...

A LOT of people in the first few months of (or even before an) MS diagnosis have been found to have CCSVI (or EVS or whatever you want to call it) ...

Devin Hubbard,
TM Rox
Tisa O'Neill
my wife
look how many others on facebook ... (or on this website)

Please - all seeking information and not spin - read Joan's (cheerleader) postings and research ... there is so much more than this (even if they want to hide behind the cover of a venogram being used ... which is great ... but that doesn't show causality - especially considering all the cases of people with VERY EARLY stage MS ... who have been found to have CCSVI, and when treated, saw great results).

But keep in mind - THIS study (which you all tout highly) DOES show a relationship between CCSVI and MS ... there is no denying it anymore 'skeptics'.

I am not going to post links for you Dredd ... do a search and read them yourself, they're all over this website ... the CCSVI alliance website, and Facebook. Peer reviewed studies ...

If you just care to post 1 study, and not research beyond that, that's fine ... but it's all out there if you have days and weeks to read it all ... I spent many months reading it all ... it's good stuff.
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Postby TMrox » Wed Nov 17, 2010 11:31 am

CCSVIhusband wrote:A LOT of people in the first few months of (or even before an) MS diagnosis have been found to have CCSVI (or EVS or whatever you want to call it) ...

Devin Hubbard,
TM Rox
Tisa O'Neill
my wife
look how many others on facebook ... (or on this website)

Thanks for mentioning me. My neuros don't even think I have MS. I have transverse myelitis that has a known risk of evolving to MS.
I was diagnosed with CCSVI just 14 months after my first and only TM episode.

I think Devin was diagnosed with CCSVI just five months after his MS diagnosis.

If I'm not mistaken Joan's husband was diagnosed with CCSVI also a few months after his MS diagnosis.

Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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First MS episode is key

Postby MarkW » Sun Nov 21, 2010 9:59 am

Date of diagnosis of MS is not a scientific measure of MS duration. The diagnosis date is very dependent on the neurologist making the diagnosis and the severity of the relapses.
Generally the duration of MS is measured from the first relapse. As a definitive diagnosis requires at least 2 relapses it could be many years after the first relapse that a definitive diagnosis is made.
In measuring if extracranial venous stenoses (EVS) are present or not, this should be made from the date of first MS relapses not diagnosis date. If EVS is not found after the first relapse but only after say 3 years that would be clinically and scientifically significant. Lots of research will be required to determine when EVS develops in pwMS.
Reversal of EVS with balloon venoplasty does not need to wait for this research as we have selective venography, which gives a definitive diagnosis of EVS.
So the key info to report is time from first relapse to diagnosis of EVS. For me this was 18.5 years from first relapse to diagnosis of 4 stenoses.
I hope that not many other people have to cope with MS for this length of time before de-stenosis.

Mark Walker - Oxfordshire, England. Retired Pharmacist. 16 years of study about MS.
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Postby newlywed4ever » Sun Nov 21, 2010 7:42 pm

Well said, MarkW...
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