This Is MS Multiple Sclerosis Knowledge & Support Community

You are reading my mind, BooBear!

If CCSVI is the cause of MS, why not get rid of it and prevent MS?

If CCSVI is 100% unrelated to MS, again, why not cure it since it is curable and could possibly interfere with oxygenation?

No matter how somebody looks at it, CCSVI should be treated if present.

BINGO.

Now we're talking people!

What is convincing to me is that we can have confidence, if we have MS, that when we get seen for CCSVI, we will be found to have CCSVI. There are many reputable doctors finding the CCSVI; it's a real observable phenomenon. It's highly associated with MS to a near one:one ratio based on the reports of everyone here and the scarcity of reports of people going in for CCVSI diagnostics who are found not to have it.

(Once in a rare while, we hear them: out of the sixty original Dake patients, one was found not to have CCSVI. 1eye knows a gentleman who travelled to India but they found nothing to be treated. A lady with a new possible MS diagnosis was found not to have CCSVI and returned to TIMS later with a different diagnosis than MS. But I can't begin to rattle off the opposing stories: I was found to have CCSVI, as was 1eye, Joan's husband, CCSVIhusband's wife, Marc, CaptBoo, nellie, etc, etc, etc.)

Taking as an assumption that the association is as high as it appears to be, coupled with a plausible explanation for how outflow obstructions could affect the blood brain barrier and the brain environment, I am reasonably convinced that CCSVI plays a huge role when it comes to the causation of MS. I would not argue that it's an exclusive role, I see how endothelial-damaging viruses, diet and exericse, and neurological-damaging stronger reactions of the immune system to the CCSVI-caused damaged or dying neurons and iron in the CNS play a part. But that is all secondary to the initial damage being caused by CCSVI.

Its far too early to talk about 'causation' Billmeik. MS was described 150 years ago and there is no agreement of the genetic or causative factors amongst MS researchers, let alone how they interact. Let's not waste our time on causation.

Debp, newbie, correctly pointed out:
Medicine these days is all about treating symptoms and not the disease isn't it?

Yes, treat the symptom of stenosed veins. In 10-20 years the researchers may have worked out why it is/is not a good idea. Or wait and live with MS. It is a personal choice.

MarkW

..

Lyon wrote:

Cece wrote:What is convincing to me is that we can have confidence, if we have MS, that when we get seen for CCSVI, we will be found to have CCSVI. There are many reputable doctors finding the CCSVI; it's a real observable phenomenon. It's highly associated with MS to a near one:one ratio based on the reports of everyone here and the scarcity of reports of people going in for CCVSI diagnostics who are found not to have it.

What you and most people are ignoring is the possibility that EVERYONE, or nearly everyone, in the developed world might have venous stenosis. If everyone has it, is it so surprising to find that nearly everyone with MS being tested for CCSVI finds that they have it?

Until it's shown via venous catheter that a significant number of the general public DON'T share this in common with MS'ers, confidence in any of this is strictly voluntary.

I have confidence in Dr. Sclafani who says that this is not something he has seen in nonMSers. ;)

He said this in response to you, in fact:
http://www.thisisms.com/ftopicp-141618.html#141618

Good to see you back, Lyon.

..

Lyon wrote:

Cece wrote:Good to see you back, Lyon.

Thanks Cece. I honestly appreciate the sentiments but I'm in the midst of trying to come to terms with myself whether a skeptic outlook in this environment is doing any more than dashing some people's hopes and pissing other people off.

For now and for the most part lurking seems to be the most comfortable option

I wish other people shared your view on confusion and anger.

It's one thing to be a skeptic ... in a lot of ways we all are. I still am.

Who knows about restenosis and all that ... and I agree, we need people to prove this doesn't exist in "normals" ... I'll volunteer to be one, whenever and wherever I can. I don't think it's just Dr. Sclafani who would say he's never seen anything like this before ... we should ask ALL CCSVI doctors that question (homework people)?

Dr. Zamboni's DOUBLE BLIND trial was approved in Italy today! ... a double blind trial that will PROVE CCSVI even further ...

I'm a "CCSVIHusband" too, so like you I believe in the treatment. But I have to hand it to Lyon - that top ten is just too funny - it can be used on anyone, just change the name - did you make that up yourself ?? That's pretty good for an MS'er !!

..

Dr. Sclafani is restarting (and going bigger and better - and spreading his knowledge throughout STATES now) ... Dr. Dake's CCSVI study is almost a go ... Dr. Zamboni is doing a double blind study ... and there are others - many others (see BooBear's post) who I don't want to leak info on ... who are ready as well (Dr. Hubbard - a neurologist believes, and he's getting others on board).

I'd say the CCSVI wave is building and will hit the shore soon ... with several more waves right behind it.

All these guys are smart doctors (a lot smarter than us commonfolk that debate here) ... Because we'll all know CCSVI is real (well we already do) but those without personal experience with CCSVI will know too.

Lyon wrote:

Cece wrote: I have confidence in Dr. Sclafani who says that this is not something he has seen in nonMSers. ;)

He said this in response to you, in fact:
http://www.thisisms.com/ftopicp-141618.html#141618

Good to see you back, Lyon.

I remember. He's said similar things a couple of times. I suppose your point is that with one Doctor's opinion we can forgo the cost and efforts clinical trials entail?

Between that and everything else, including all my own personal doppler and MRV that both showed CCSVI and reflux, I am confident enough to pursue CCSVI treatment for myself. I think this is something where we may be talking about different things at times here on TIMS. There's that difference between what it takes to personally be confident enough in this to go for it physically and financially and the separate debate of how proven is it, etc. Because this is not proven and I don't think anyone is claiming it is. We are dealing with anecdotes and doctors' opinions and reported clinical findings and sometimes contradictory research findings...so to always point out that this is what we're sifting through to make sense of CCSVI does get old at times.

All these guys are smart doctors (a lot smarter than us commonfolk that debate here)

I've seen plenty of smart people around here, it's a good group. But all except one or two lack the years of med school, residency, and years of experience that would come in handy.

Then again, that describes Colin Rose as well.

..

Hey, Zamboni found CCSVI in 100% of his people, Sinan near the same, as well as Simka, Sclafani, Dake, Siskin, and my wife's doctor ... there is a very high correlation ...

CCSVI is real. There are animal models coming, double blind studies are coming ... CCSVI is going to be a tsunami crashing on the beach soon ...