This Is MS Multiple Sclerosis Community: Knowledge & Support

I feel pretty dumb but what are "clinically isolated" patients "CIS"?

And why include them in a study designed to replicate Zamboni? This is really disappointing.

I'm gonna get "I told you so" from my neuro.

This is only a press release. When does the report with numbers we can study get published?

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Kat

The data released today is consistent with what would be expected from a valid scientific study that found significant correlation between MS and CCSVI.

Earlier studies that showed a 100% or 95% correlation threw up red flags for most serious researchers. MS is a very complicated and very heterogeneous disease. Furthermore, it's generally accepted that 10 to 15% of people diagnosed with MS have actually been misdiagnosed, and are suffering from some other malady.

I've been taking part in a study at the National Institutes of Health that is addressing just this problem with misdiagnosis. The NIH had found that so many of its test subjects had actually been misdiagnosed that it was skewing the results of many of their MS research projects. I was involved in a study in which they were trying to find a pool of test subjects that they were confident had MS, to be used in future research. They determined that I most likely do not have MS, although they're not sure what it is exactly I do have.

Because of the significant level of misdiagnosis, a study showing upwards of 95% of MS patients having any trait should be looked upon as suspect.

The Buffalo findings are right in line with what I was expecting. The CNS venous system is largely unresearched, and there is no clear definition as to what "normal" is. The fact that 25% of normal test subjects proved to have venous anomalies speaks to that factor.

I'm hopeful that the Buffalo numbers will convince serious scientists to take a good long look at CCSVI. The earlier studies showing a nearly 1 to 1 correlation were easily dismissed by those familiar with the intricacies of Multiple Sclerosis.

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Marc
www.wheelchairkamikaze.com

We are all hanging on every word with so much "riding on" these statistics. And it is totally understandable.

Remember the recovery that is recorded in the Tracking thread, post CCSVI to remember our Faith. I did and it helped.

I had this diagnosis for a very short time. It's when you've had one attack but not more. MS by definition is multiple in space and time.

A large percentage of CISers progress into MS.

The surprise to me is the number of controls with CCSVI. I am really curious now about the iron loading statistics. MS has always been a disease where more than one thing has to go wrong in order to get it (bad genes, not enough vitamin D or B12 growing up, etc.). It reminds me of a plane crash as described in Malcolm Gladwell's book Outliers: that in a typical plane crash 7 things have gone wrong (a wheel is out, a storm hits, the copilot is culturally subservient and doesn't bring up concerns, pilot has a cold, etc.)

So for MS maybe CCSVI is one of the 7 things that can go wrong...but you need the other pieces as well. So these control people who have CCSVI, maybe they got the vitamin D and B12, they didn't catch Epstein-Barr, they didn't have the other things going wrong.

A lot of the things going wrong with MS are in the past: you can't uncatch Epstein Barr, you can't go back to your childhood and move yourself somewhere sunny. But CCSVI is a thing going wrong that can be changed and that continues to be remarkable and exciting.

The data can be analyzed every which way. I'm curious if the MS group with CCSVI will show heavier iron loads in the brain than the MS group that was not found with CCSVI. Or if the MS with CCSVI group will show heavier iron loads than the controls with CCSVI.

You can also re-analyze the data and leave the CISers out of it. It would be interesting to know if their inclusion did bring down the percentages.

56% is still a solid showing.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

marc,

I appreciate your reasoned analysis. I loved the drama of 100% or 95% or 0% but I had a nagging feeling that it was "too good to be true". This is not as exciting but when the numbers come out we can all take a good look at it.

In the meantime, I KNOW I have CDMS and I'm getting tested for CCSVI next week.

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Kat

Very positive report on LBC (London's Biggest Conversation). Amongst other things Martin - Wonky1) is propelled into fame (fortune to follow ). http://www.lbc.co.uk/breakthrough-gives ... o-ms-20097

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Nigel

That's a really good report. And, this is a great way to describe the study results:

"Scientists have discovered that people with MS are more than twice as likely to have abnormal blood flow in the neck."

On another note, because I was feeling low over the 55% and questioning everything I thought I knew, I pulled up my venography pics and thoroughly enjoyed watching my own rich network of collateral veins obliterated by stent deployment. I feel grounded again.

I'm surprised people are disappointed. These results are GREAT! VERY exciting. This is sufficient to motivate more research without it sitting on a shelf indefinitely.

I think it's wonderful!

At the Hamilton workshop, the patients in the 100% study were described as Dr. Salvi's patients. So they were not a group that had been screened and treated by a variety of doctors and therefore it is understandable that there would be a stronger correlation.

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diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri

The clear findings from BNAC are that there is a significant relationship between CCSVI and MS. This is very positive and is a step forward in the understanding of MS - good for all of us and everyone who might develop MS in the future!

The logical next step is to clear the stenosis and assess the impact on MS patients. The early indications from all of you who have done this is very positive and encouraging.

I, for one, am very excited to get tested and treated.

Hope springs eternal!

Quite frankly, I think they would get much better results concerning abnormalities if they would simply test iron! Why the hell are they not doing simple blood tests first off??? It's just a blood test, and I bet you they would pick up iron metabolism abnormalities in 100% of the people... all of this rigorous expensive testing and all they need to do is test iron metabolism. I'm disgusted.

Add me to the group who see these results in a very positive way. I confess that I was confused before about how such a variable disease could produce such a uniform result. In fact this is the sort of result one would expect if venous insufficiency is playing a causitive role in the disease - there must be a significant number who would present with accumulated nerve damage but whose disease activity is dormant and the insufficiency undetactable.

I am extremely excited to see what is discovered once the iron deposit data is analyzed.

Sorry but I think these results will blow the lid off MS research.

Elevated iron levels in our blood is nothing new. What is being tested in CCSVI is a theory of how they come about..

For example http://journals.cambridge.org/action/di ... aid=239063

-edit- damnit wrong link! ignore that, this is the sort of thing that I meant to post.. http://news.bbc.co.uk/1/hi/health/4724414.stm

For me the results are a confirmation of the association between CCSVI and MS.

Regarding the reactions of the doctors about the original studies showing 100% correlation, it shows they are doctors not staticians. The key phrase is sample size.

I don't know 55/62% compared to 25% not a bad percentage? Remain, cautiously optimistic as well...