Is it 80% for CDMS?

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

Postby TFau » Thu Feb 11, 2010 11:33 am

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.
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Postby nicko » Thu Feb 11, 2010 7:53 pm

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
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Postby cheerleader » Thu Feb 11, 2010 8:21 pm

Direct-MS wrote:Of course such data might be interpreted to mean CCSVI develops as MS progresses but if one accepts the consensus opinion of the vascular researchers that the vascular malformations that constitute CCSVI are congenital, then the hypothesis that CCSVI makes MS worse (as opposed to the hypothesis that MS makes CCSVI worse) would be the best one.
This is one more solid reason that one would want CCSVI resolved asap.


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-

Lesion etiology is non-specific (congenital/hereditary, osseous impingement, arterial compression, post-inflammatory, arachnoid granulation, etc., alone or in combination


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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Thu Feb 11, 2010 8:23 pm

Direct-MS wrote:This is one more solid reason that one would want CCSVI resolved asap.


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.

cheer wrote: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.


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).
Last edited by Cece on Thu Feb 11, 2010 8:53 pm, edited 1 time in total.
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Postby L » Thu Feb 11, 2010 8:45 pm

Cece wrote:
Direct-MS wrote:This is one more solid reason that one would want CCSVI resolved asap.


I hope to be half as convincing as you are here when I talk to my neurologist about this next week.


Good luck with that. Is he/she reasonable and open minded do you think?
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Postby Cece » Thu Feb 11, 2010 9:12 pm

L wrote: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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Postby L » Fri Feb 12, 2010 1:08 pm

Wow, that's great Cece. I get the feeling that this is quite unusual!
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Postby Cece » Fri Feb 12, 2010 4:30 pm

L wrote: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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