This Is MS Multiple Sclerosis Community: Knowledge & Support

I have MS. I'm waiting for a call back from Dr. Siskin and plan to travel to Albany to be treated. I also have a brother w/ MS. However, I also have a sister who has been in a wheelchair for 10 years because of Spinal Cerebellar Disease. When they finally gave her this diagnosis, my interpretation of it is that she has "We're sorry you can't walk, but we don't know what's wrong with you" Disease.

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!

With MS running in your family the way it does...yes, I'd urge her to get checked out too.

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.

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"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

Hi Briggie,

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

This is a very interesting topic...thanks so much, TMrox for sharing your experience. It only makes sense that the same process would affect different levels of the brain and spine, depending on location and severity of stenosis or reflux. Dr. Dake commented that CCSVI reminded him of congestive venous myelopathy found along the spinal column, so it seems the pieces are coming together.

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,
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I was having a talk with a family member about CCSVI. I started explaining what it is and mentioned the blockage in the jugulars. Immediately she said my great grandmother who has alzheimers was found to 80% blockage in her jugulars awhile back. Unfortunately because of her age they decided against fixing it from what I understand.