This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome, emholtzman26! Will you be able to attend the CCSVI patient day? Dr. Sclafani, who posts here, is the one who pulled this together as well as the two days for the doctors immediately following our patient day.

HAPPY THREE YEAR ANNIVERSARY TO THE CCSVI FORUM!!!

Let the peer-reviewed publication of research into the vascular connection to MS continue.
cheer

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

So now that we're three years out, were are we?

When I first joined, CCSVI seemed too good to be true, and I was waiting to see if time would clobber it. But seems to have stood the test of time. On the other hand, doesn't seem to be proven yet either.

So where are we? Is this "cold fusion" or "simple antibiotics can cure stomach ulcers" Is there any scientific consensus yet?

There seems to be a lot of negative reports still, but a zillion really cool videos.
What happened to the original pioneers from three years ago, did they stay better, or did it turn out to be placebo? Because surely you can't have placebo after three years.

Placebo is supposed to last six months at most, although there could be debate over that.
I'd say the scientific consensus is that, yes, CCSVI is more common in pwMS than in healthy controls. Beyond that, there is not a consensus on what it means that there is an association between MS and CCSVI. (Does one cause the other? Multifactorial? What effect does treating CCSVI have on MS?) But, compared to three years ago, there is a strong interest in CCSVI among the scientific community, in particular vascular researchers such as IRs. Just look at the conferences featuring discussion of CCSVI, and presentation of research on CCSVI. (ISNVD, SIR, ISET all coming up.)

There is research being done, although not the large-scale university research I'd like to see. Brave Dreams is Dr. Zamboni's large-scale RCT in Italy, but we need that duplicated here too.
Some of the pioneers are most definitely better, some are not.
It's not too good to be true.

see Canadian special on MS wars
http://vimeo.com/37484943

Awesome, thank you! We in the US were previously blocked from viewing it at the network site.

Bacterial infections weakens the veins the need for CCSVI may because of the CPn bacteria
http://www.cosmeticcentre.com.au/client ... 043332.pdf

This thread began as a discussion of CCSVI and Dr. Zamboni's studies. Since that time, Marie Rhodes has authored a book on CCSVI in MS. www.ccsvibook.com
She discusses cpn as a possible infection with vascular consequences of pages 43-45.
There are dozens of endothelial disrupters which can change the lining of the veins, and lead to more severe stenosis and slowed blood flow. These include metals such as mercury and cadmium, plastics, diesel fuel exhaust
food such as transfats and glucose
vitamin deficiencies such as D and B12
lack of exercise
cortisol and stress
viruses such as EBV
and a host of other environmental and infectious agents. There is not one cause of endothelial disfunction. For the full list and meaures that can help heal the endothelium, please see http://www.ccsvi.org/index.php/helping- ... ial-health

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