This Is MS Multiple Sclerosis Knowledge & Support Community

Rokkit wrote:

I just wish someone would publish a good-sized, venography study comparing pwMS to healthy controls.

I could not agree more. I have seen plenty of XRay venograms of pwMS clearly showing severe blockages of IJVs etc., including my own. But if I was asked "don't these occur in people without MS?", I would not know the answer.

If this study were carried out using the "Gold Standard" XRay Venography and showed conclusively that the blockages are far more prevelant in pwMS then, surely, the MS societies and neurologists would have to accept that a new dimension to MS has been discovered and that it should be more enthusiastically researched.

It would be black-and-white proof of a physical problem with pwMS which would be much harder to dismiss than the flow issue which, with its complexity, training requirements etc, seems to be a difficult message to get across

drbart wrote:Hubbard brings this up in his talks on YT. But, he hadn't mentioned his own non-normal test, that I know of.

It's interesting, isn't it. I also had not heard of him having an abnormal test before this. (But as it was an ordinary MRV, those haven't been correlating well with what's seen on catheter venography or been particularly good at distinguishing between healthy controls and people with MS.)

More research needed....willm, I agree with you, except how do you talk the healthy controls into being in a control group for an invasive procedure? Or get that past an IRB? You'd want non-related controls, maybe spouses? Or is there any group of patients who are getting a catheter venogram done anyway that would be healthy enough to serve as the control group?

Or can the catheter venogram studies be done as cadaver research?

drbart wrote:By some accounts, fatigue is the #1 indicator of whether relief of symptoms will follow relief of CCSVI.

Speaking of which, we'll all be hanging on any news about your outcome.

No pressure or anything..

Dr. Dake's RR patients showed a reduction in fatigue by 50% that was getting even better after a year...wouldn't that be something!

Sorry, I couldn't get through all 4 pages on this discussion.

But as someone said, Arlene Hubbard is on FB and answers ALL questions (at least all the ones I've asked her).

Has anyone just asked Arlene what her husband was implying?

I'd rather hear it from the horse's mouth than watch others debate 3rd hand information til the cows come home.

selkie wrote:Sorry, I couldn't get through all 4 pages on this discussion.

But as someone said, Arlene Hubbard is on FB and answers ALL questions (at least all the ones I've asked her).

Has anyone just asked Arlene what her husband was implying?

I'd rather hear it from the horse's mouth than watch others debate 3rd hand information til the cows come home.

Arlene's explanation of her husband's remarks was posted on one of the pages you couldn't get through.

..

Lyon wrote:...that Hubbard's statement wasn't proof positive damning to the theory of CCSVI and didn't make or break ANYTHING but SHOULD be considered good reason to consider that maybe we don't know and shouldn't be so convinced that "normal" means without obstruction/reflux.

I agree. More research needed. And it can't come soon enough.