So I've read that CCSVI is sometimes present in "other" neurological conditions, but I'm having no luck googling to find out anything about it. Does anyone have any information or ideas?
My sister cannot travel to NY. Also, an MRV would be very difficult on her (although I've been reading lately that an MRV isn't the best test, anyway). What IS the best test, and could it be done on her while she's sitting up in her wheelchair?
These forums and discussions all move so fast that it's difficult to keep up, so I figured I'd better just start my own thread. Thanks for any information you have!
Dr. Siskin does not do any of the imaging but goes straight to the "gold standard" of cathether venogram.
Other than MRV, the only other test is transcranial doppler. I think it is usually done both lying down and standing, but since this is not possible, they would have to modify it.
I do not have MS, but I was diagnosed with CCSVI.
I have Transverse Myelitis (TM), a demyelinating disorder that affects only the spinal cord (not the brain).
When I first read about CCSVI, about six months ago, I saw some reports in the media (wrongly) stating that CCSVI was only present in MS patients and not in other neuro diseases.
Despite these reports, I thought since a few TM cases develop MS, CCSVI might also be involved.
An experienced vascular surgeon agreed to test me, but he warned me that he was not aware of any other neuro-inflammatory diseases being linked to CCSVI.
To our surprise, this doc found that I had a 100% stenosis in my azygous vein and more than 90% in the internal left jugular vein. I had a balloon angioplasty three months ago.
Since my liberation procedure I've been in contact with most of the main researchers in CCSVI and those who recently received grants to study CCSVI.
I got quite a few responses saying that CCSVI is very likely to be related to other autoimmune and neuro-inflamatory diseases, including mine Transverse Myelitis.
Not much research has been done (yet) about this posibility. However, the study of Buffalo University included a sub-set of other diseases, such as neurosarcoidosis, Devic's, CIS and "others".
It seems that the incidence of CCSVI among this group was less than those with MS but more than the ones in the healthy controls.
Dr Zivadinov results about other diseases and CCSVI at:
http://hosted.mediasite.com/mediasite/V ... ebb41a8ba6
more about my case at:
http://www.myelitis.org/forum/viewtopic ... 21&start=0
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Dr. Zamboni has stated that CCSVI in found in MS only, but I do not believe he tested other spinal myelopathy diseases--although I know he tested other neurological diseases like Alzheimers and Parkinsons.
Briggie--I would get your sister tested by a local vascular doctor and see if her azygos vein is twisted or stenosied. Best to you and your family,
dx dual jugular vein stenosis (CCSVI) 4/09
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