This Is MS Multiple Sclerosis Community: Knowledge & Support

Interesting Direct-MS. So if CCSVI correlates to MS progression, there are (at least) two models explaining how it works: it may be static, where the mere presence of CCSVI indicates a higher chance of progression, or dynamic, where CCSVI progresses causing increased MS progression.

We need studies to correlate pattern of CCSVI AND extent of reflux compared to MS progression to determine this, I suppose. I think Buffalo is doing some of this, although they may be doing it indirectly by looking at the extent of Fe deposition.

Has the 80% been confirmed? I've only read it in 3 canadian articles.
But they all orginate from the canadian press.

http://www.google.com/hostednews/canadi ... lWEAgfVkvw

http://www.winnipegfreepress.com/life/h ... Comments=y

http://www.healthzone.ca/health/newsfea ... f-ms-study

Hi Direct-MS! Nice to see you here in the discussion. Some of the venous malformations Dr. Dake has been noting are most certainly congenital- this is from his presentation in Hamilton-



He has seen a variety of issues which he believes are congenital or hereditary....but not just one specific malformation. We may find that some people can tolerate their particular malformation until an event happens (EBV infection, injury, stress related incident, endothelial disruption) when the reflux becomes exacerbated. My husband lost his peripheral vision at 12...no doctor could figure out why...he had drusen, but they suddenly blocked his vision. It wasn't for another 30 years to his MS diagnosis. Obviously, there was a slow and steady progression.

I agree, let's take care of the venous blockage, get the blood flowing and then figure out the rest of the puzzle. No matter which comes first- venous reflux is not good for the brain and spine.
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 hope to be half as convincing as you are here when I talk to my neurologist about this next week.

It does make sense however that the classification by the Phlebology Institute of CCSVI as congenital may not encompass every last case of CCSVI. Maybe most are congenital and some are acquired. Osseo infringement (when a bone presses on a vein) might be one that could be acquired in a car accident...also the arachnoid cyst one, if an arachnoid cyst is something that can grow later in life. Not sure how that would effect the numbers and percentages.



This fits with the way Zamboni only started counting it as CCSVI when there were two stenoses. The body could work around one. The body can even kinda sorta work around two...as long as you don't go hiking on top of Mt. Haleakala (as I did, immediately prior to an ON attack).

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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

Good luck with that. Is he/she reasonable and open minded do you think?

Yes. He actually brought up the possible vascular connection to m.s. in our last meeting a year ago. It was an interesting conversation, particularly in retrospect.

How did it go...he'd hinted at exciting new treatments, I asked if he was referring to the possibility of pills instead of shots, he said no, and that m.s. is also a disease of the vascular system, I said of course, he was surprised, I said that I'd had to learn about the immune system & the brain & things like endothelial cells and the blood brain barrier, and that t-cells shouldn't be infiltrating the brain if there weren't something wrong with the BBB, he seemed to agree, and that's when he asked some seemingly random questions about anemia and iron pills and if I'd had my wisdom teeth removed. Neck pain and headaches were also in there. He stopped short of recommending I stop taking my multivitamin with iron and waved it off as too preliminary to say one way or another.

Anyway, I don't know if I'll get an MRV referral out of him, but I'd say at least back then he may have known more about CCSVI than I did. (And my hopes that I'll be convincing are because I want to convince him that it is worth investigating now, regardless of whether it's still preliminary, and I really, really want that MRV referral.)

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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

Wow, that's great Cece. I get the feeling that this is quite unusual!

I don't know that there's anyone else here on the forums who first heard about CCSVI from their neurologist, in a good way.

Sorry though, I didn't mean to hijack the thread....

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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