This Is MS Multiple Sclerosis Knowledge & Support Community

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.

Rox

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.

MarkW

Well said, MarkW...