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

Thoracic spine lesions

I have some - so this would this indicate a blocked azygos I take it? Anyone else with lesions that low?
Read more : Thoracic spine lesions | Views : 1679 | Replies : 1

Diet/Nutrition/Lifestyle in the CCSVI paradigm

Had a great visit with Dr. John Cooke at Stanford. He's the endothelial researcher there and the man that connected me to Dr. Dake. He's applying for grants to study CCSVI in animals and at the serum/endothelial level. He had some suggestions for MS patients searching for vascular/venous health.

1. Exercise! This is the best way to keep the endothelium healthy and nitric oxide levels balanced. Cardiovascular/aerobic exercise is best. Anyway you can get the ...
Read more : Diet/Nutrition/Lifestyle in the CCSVI paradigm | Views : 1618 | Replies : 5

Stent flexibility?

I can not say I have seen (ie remember seeing :oops: ) any discussion regarding the flexibility of the stents people are having implanted currently.

Do these stents "bend"?

To be clearer, if I had one big enough to insert my finger into, and long enough to cover the length of my finger, could I bend my finger? easily? is it like a "slinky" or more like ...
Read more : Stent flexibility? | Views : 1265 | Replies : 2

Paying for Stanford if You're Not From USA

Hi All,

I guess this question is mostly directly to people from outside the US whose insurance wouldn't cover international treatments... How did (or do you) plan on paying for the testing + procedure? When I called up stanford, they nurse said the MRI would cost roughly $8-12k, and the procedure anywhere from 60-80k, and that is after a 40% discount! 8O

I'd be really interested in ...
Read more : Paying for Stanford if You're Not From USA | Views : 3347 | Replies : 25

2004 article on oligodendrocyte death

Was browsing around today and found this:

"This patient proved to be unique in the history of multiple sclerosis in that there was lesion available for study that was less than a day old," said Prineas.

According to the dominant theory of MS, when the researchers examined the hours-old lesion, they should have found the beginnings of an immune system attack.

But Prineas and Barnett noticed that the myelin in the lesion was still ...
Read more : 2004 article on oligodendrocyte death | Views : 1794 | Replies : 10

I started a blog

Well I'm finally a blogger! I started it since I have so many wonderful friends and family who just don't know how to do internet forums and they all want to stay current with how this works out. And since I'm windier than a bag of buttholes, it will give me a place to release some of my writing angst :lol: . The address is here: ...
Read more : I started a blog | Views : 11859 | Replies : 118

Mel & Jamie's ongoing Stanford experience post!

Does exactly what it says on the tin.

We head off early tomorrow morning, arrive at Stanford lunch time and have the scans in the afternoon.

We'll hopefully meet with Dr. Dake after that and IF (!) stenosis is found she'll be treated the next day.

I'm taking my computer so I can keep up with work so I'll keep everyone posted as to our progress.

Wish her luck!
Read more : Mel & Jamie's ongoing Stanford experience post! | Views : 11710 | Replies : 130

KISS 4 me

This post has nothing to do with EBV.

Ever since being diagnosed ten years ago, I've thought there has to be a simple explanation for MS. MS and many other diseases, in my opinion, start because of a basic problem.

I think too often, scientists can't see the forest for the trees...or do not want to see the forest. Everything is overcomplicated. IMO, CCSVI, fits the KISS method. KISS = keep it simple stupid. I ...
Read more : KISS 4 me | Views : 1862 | Replies : 6

CCSVI and new research on "myelin stall out"

ScienceDaily (July 1, 2009) — Scientists have uncovered new evidence suggesting that damage to nerve cells in people with multiple sclerosis accumulates because the body's natural mechanism for repair of the nerve coating called "myelin" stalls out.

The study, published July 1, 2009, in the print edition of Genes & Development, was conducted by scientists at the University of California, San Francisco and University of Cambridge. The research was led by co-senior investigator David Rowitch, ...
Read more : CCSVI and new research on "myelin stall out" | Views : 1590 | Replies : 5


I'm wondering what people think about any connection with CCSVI? I've noticed that several of us on the site have referenced having discoloration and/or Raynaud's. It's something I intend to speak with Dr. Dake about, but it would be great to hear if others have these issues in their hands and feet and what might be going on.
Read more : Discoloration/Raynaud's | Views : 1897 | Replies : 14


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