This Is MS Multiple Sclerosis Community: Knowledge & Support

It's true that they applied the same entirely wrong-headed exclusions to both groups and found a strong relative difference between CIS or early RRMS and RRMS of greater than ten years. (I don't personally think that RRMS at 10 years is late-stage MS, do you? I don't know that there is such a category as late-stage RRMS, because late-stage RRMS to me is SPMS, and I don't think this is what they meant. But this is a quibble. Excluding valve issues remains the main concern.)

I don't have an explanation for the relative difference, but I believe we cannot draw any conclusions from this study. Unfortunately.

http://www.mult-sclerosis.org/secondary ... rosis.html

That's almost too wide of a range to be meaningful. I think the stats are that half of RRMSers have converted to SPMS at 10 years, and 80% at 20 years.

I pay more attention to age, not years since onset: RRMS tends to shift into SPMS at age forty. This is also the age, in normal folks, when the amount of myelin in the brain peaks and then begins to decline.

To follow along with this point, accumulated disability is not generally associated with RR MS as it is with SP or PP MS. Thus it is poor data from which to seek to non-associate stenosed veins and disability. One needs to include other MS groups before drawing such conclusions.

The other point (albeit not thoroughly tested) is that relieving stenoses seems to have a beneficial affect on disability and other MS symptoms. Also the theory that the stenosed veins are the product of a bad brain is challenged by those of us whose stenoses appear as malformations and are therefore congenital.

But this study does explain the differing prevalence findings in various studies. For instance the recent Dutch study they used 19 RR patients and 1 PP. And found only 50% had stenoses.

As far as I'm concerned, this study doesn't refute the possibility presented by the data that MS may cause stenoses which then contributes to disability.

Cece I also wouldn't be entirely disheartened if CCSVI did not cause MS directly. If something like 90% of LMS have CCSVI then its possible that treatment may relieve symptoms of MS even if it does not cure it per se.

As ikulo said, the study set a high burden of proof and did detect stenosis in LMS which is a step foward for this theory.

Ok can anyone tell me WHAT kind of study would coclusively either rule CCSVI in or CCSVI out. I thought that the venogram being the "gold standard" was what everyone was pushing for but now that is not good enough either? I will say I am FAR from an expert on the veinuous but for a disease that can render someone in a wheel chair, unable to swallow, and blind should it really be this difficult to identify CCSVI?

It's just more circular logic meant to confuse people ... and they're doing it by creating "studies" that aren't studying what they should be.

I really wish the initial set of patients, Magoo, Rose2, Cheer's husband and the like, posted more often. But there is a reason they don't as much anymore ... because they are busy living their life now! ... please, if you're new, go back and read the research and results from some of those people.

Just a reminder of my new disclaimer:

This forum is to discuss CCSVI. I will be respectful of others, try to not to repeat myself(alhtough this only has been pointed out as a problem when something critical of CCSVI is stated,how many times have we heard about Colin Rose??), and remain mindful of the rules of this board. I WILL post when I have a new idea or thought and I will post it in the CCSVI forum if it relates to CCSVI.However I will attempt to start new threads so that, if you know what I write may upset you, please do not click on my post. Generally I believe most of us can have a decent discussion but unfortunately some of the members on here seem to go into a tailspin when there is anything critical of CCSVI posted. Lyon, concerned, Malden,etc. may I suggest not repsonding to the few on here that conitnue to rant and rave over any thought, idea, or question we may have relating to CCSVI. I have received numerous PM's from people who believe that CCSVI is the real deal supporting keeping this board neutral and keeping this a place of OPEN discussion. If I choose to post my questions to Dr. Scalfini I will do so but what I value is the discussion I have with the people on this board.

So to show you I have lost my stinger I will respond as such:

I am very sorry that you feel what I say is jibberwocky. Anything I say regarding this topic will be potsed in a new thread so as not to develop a "cicular argument on this thread". Thank you for pointing this out.

CCSVIhusband: Does your constant denigration of the skeptics' bring anything new to the table? Is it in line with the rules of the board?




PLEASE!!! DO!!!

Scorpion, they first have to agree on what CCSVI is. I'm disappointed that they found valve issues and jugular agenesis and excluded them when those are CCSVI. It's really not about what type of outflow obstruction you have, it's that you have an outflow obstruction.

But I still like what dreddk pointed out, that we can compare the two groups because the same crazy exclusions applied to both. It's relative. And with so much excluded, it would have been more likely to not find CCSVI, so the findings that 12 out of 13 RR MSers of more than 10 years but not yet converted to SPMS had CCSVI by their narrow definitions of CCSVI is especially significant.

If 50% of RRMSers convert to SPMS in ten years, then the 50% that don't may have a milder form of MS and/or CCSVI or just be lucky or be diagnosed earlier and have a longer time in this stage before converting to SPMS, which as I said is typically around age forty.

I put a lot of faith in whatever direction the SIR group that met last month chose for the upcoming research of CCSVI.

I wonder about all this research that is coming out that reflects a misunderstanding of CCSVI from the start. Maybe it has been easier for us to learn because we had nothing to unlearn.

When the Doppler Ultrasound studies came out they were dismissed because they were prone to operator error, unlike an MRV. When the MRV study came out it was dismissed because it wasn't a venogram. Now that a venogram comes out, it's dissmissed because it's not a Doppler Ultrasound.

This is not how one wins friends and influences people in the scientific community.

The venogram is the gold standard. I think for CCSVI to be found there should be an obstruction or narrowing that causes backflow (or poor drainage). I think Cece's point is that anything that could create an obstruction in a neck vein should be in play such as a faulty valve. For me it should also include a venous malformation because that's what I think I have. No one wants to be left out of a study.

That being said, all these studies have to be taken into account and weighed. They each have limitations to be highlighted and each can be debated. But they each are published peer-reviewed papers. Thus far, they haven't exactly been a ringing endorsement of Zamboni's theory.

There are still many more studies to come in. So though us CCSVIers may be behind a bit in the score as far as independent validation goes (well actually a lot ) at these early stages, we're confident that CCSVI will rally and storm back for the win.

I am very happy that it's a catheter venogram study. I have not seen anyone dismissing it due to it being a catheter venogram study. The flaws are in other areas, but not that one.

Finding CCSVI in 12 out of 13 late RRMS is a ringing endorsement. Especially when it's found under such stringent exclusion criteria.

There was positive research presented at ECTRIMS too, wasn't there?

Scorpion, no need to start a new thread, you're welcome in here. We've kept it at discussion so far, not arguing, I think? I've posted a lot, I am genuinely upset that they'd undertake a catheter venogram study (our first?) and exclude valve issues. I can dig up if we've ever had an estimate of how much CCSVI is valve issues, but it's a high percentage, from what I understand.

Here is drsclafani, correcting my original misunderstanding that valves were a small part of CCSVI:


So when I'm told that CCSVI is mostly a valve problem and then that the Beirut study excluded valves....!

http://www.thisisms.com/ftopicp-113019.html#113019

Is Dr. Sclafani wrong? I'm sure it happens sometimes, but I think it is more likely that the Beirut study is wrong.

Well, that could lead to arguing....

More Sclafani quotes!


So in the Beirut study, if they found a narrowing that was in fact the result of a valve problem but they didn't realize it was a result of a valve problem, then it would have been included as CCSVI.

Cece,

What is CCSVI if it's not an obstruction of veins draining the brain and spine.

Let's define that as CCSVI and go from there.

Does a malformed, stuck, fused valve obstruct proper drainage? You bet.

Does a missing vein obstruct proper drainage? You bet.

Does a narrowing obstruct proper drainage? You bet.

Does a web obstruct proper drainage? You bet.


But not according to this study. As I said, any researcher worth his or her salt, can conduct a study to tell you anything you want to hear about a topic. It just so happens that this is what they wanted to hear for this study. At least it admits that CCSVI is real ... now, define CCSVI ... (I think we can agree it's insufficient drainage) OK ... so did they include all possible insufficient drainage? Nope ... OK so invalid study in that respect.

And we'll wait for more studies to confirm (as Jugular said) CCSVI will come roaring back.

Do you believe Dr. Sclafani (a vein surgeon) and all the other doctors who are working on this ... or a bunch of neurologists with a vested interest in the auto-immune theory? I know where I'd lay my money if I were a betting man.