80% for CDMS - It's Real

[Billmeik]

I wonder if the cdms numberinclude the borderline cases? Is there another 10.2% waiting in the wings? 90% would be pretty darn conclusive if it came from a solid double blinded source.


wo.

[Cece]

For that reason the thisisms CCSVI threads have turned into nothing but a 24/7 CCSVI pep rally. A GREAT place to go if you only want to hear good (but undocumented) things about CCSVI. That is wonderful for the people who want have convinced themselves that unjustified hope is all they want, but what about the people who are coming to thisisms for both sides of the story?

I guess it just makes sense to me that the forum here is pro-CCSVI; if we were against it, we'd have no motivation to analyze every tiny little detail.

What do you make of the email response from Z. saying that, yes, they found 80% CCSVI in CSMS? If you consider this a replication of Zamboni's findings, then what do you think it all means?

It could be fun to have a thread called pep rally, where we could just gush with excitement over CCSVI, you know? A thread full of "OMG!!!" and "ZOMG!!!" and "CURE cure CURE cure CURE!!!" As a whole, and it leaks through, but I'm holding back a great deal of joy at all these findings and all the possibilities. (I don't think such a thread would fly here, however....)

Shred not unto others, if you would not have them shred unto you?

Lyon, I've enjoyed the conversation with you.

[Cece]

I wonder if the cdms numberinclude the borderline cases? Is there another 10.2% waiting in the wings? 90% would be pretty darn conclusive if it came from a solid double blinded source.

With numbers this high, 80% or 90% or 95%, wow. I think you are probably right about those borderline cases, but it doesn't even matter.

So this piece of the results is: 80% people with CDMS have CCSVI, 22% controls have CCSVI. Double-blinded, replicated. Am I right in thinking this is just with the Doppler transcranial ultrasound results? And didn't somewhere Dr. Haake said that they were finding that the MRV was not as good a tool as the transcranial doppler? If that's true, it might be that the results drop or get muddy when the MRV data gets entered in.

[mshusband]

So ... I was questioning whether the wife and I should go to Buffalo to get scanned considering they only were finding 62% of CCSVI in MS ... but now that the number is 80% ... we're considering spending the $4,500 (consider it a large one time donation to a worthy cause) and getting the test.

My question then becomes ... once we have proof she has CCSVI ... where do we go from there? WHO would treat it? HOW would we find them? If having a diagnosis does no good ... then what is the point of having a diagnosis if nobody is willing to treat you?

Any thoughts?

[Billmeik]

Now I'm too cheap to get pictures taken because my ms is mild and I'm thinking it won't get seen except by the 5 dudes.(Zamboni,Zivandof,Haake, Dake and Simka)


Others would know better than I. Do you think they'll see anything at false creek?

[Billmeik]

once we have proof she has CCSVI ... where do we go from there?

vascular surgeons. And dont even mention ms.

[mshusband]

Not going to False Creek ... going to Buffalo since they're offering it up there for $4,500 ...

Then it would be one of the big 5 ...

[JoyIsMyStrength]

the 5 dudes.(Zamboni,Zivandof,Haake, Dake and Simka)

That is hilarious Billmeik! Here's to the 5 dudes!

[patientx]

Here's a question for the list:

Why are the Buffalo numbers so wildly different from Zamboni's?

[Cece]

Buffalo's 80% CDMS with CCSVI is not wildly different than Zamboni's 100%, is it? It could be a result of differences in technique or in the degree of certainty that the patient truly had m.s. Wheelchair Kamikaze has posted about NIH looking into just how many people with m.s. are misdiagnosed, because the number is high enough that it can mess with study results.

80% is the correct figure to compare with Zamboni's, not the 56%, because the 56% group included CISers and Zamboni's study did not include any CISers.

The other figure - 22% controls with CCSVI vs. 0% - is surprising. Hopefully future studies will reconcile the difference. Zamboni's study may have set the bar higher so that, if he were testing the 22% controls, he'd have judged them to be not CCSVI, whereas Buffalo may have set the bar lower (again due to differences of technique or inexperience with the transcranial doppler), and that accounts for the difference. This could also fit with the information that in the fall they flew someone from Zamboni's team out to Buffalo to train them on the Doppler.

[Billmeik]

so when you look at these numbers now the odd thing is the high percentage for the controls. One idea is that if you looked for lesions, the ms group would have 100% but the controls would have 5% so that's a quarter...dunno about the other bunch though..

[L]

Remember that you'll have to take into account that some 5-10% of that population of which 80% have CDMS would likely be misdiagnosed.

Of course, the figures of CCSVI in non MS controls would apply to that 5-10 but it would raise that 80% to a degree..

[frodo]

so when you look at these numbers now the odd thing is the high percentage for the controls. One idea is that if you looked for lesions, the ms group would have 100% but the controls would have 5% so that's a quarter...dunno about the other bunch though..

Somebody said in another thread that most controls were familiars of people with MS. This would explain the higher-than-normal prevalence of CCSVI among them.

[Cece]

Somebody said in another thread that most controls were familiars of people with MS. This would explain the higher-than-normal prevalence of CCSVI among them.

That's one theory, anyway...we don't know how many of the controls were family members of people with m.s., so I can't agree with saying most were, just that some were. I personally have heard of only one, the father of someone here who served as a control while he himself served in the m.s. group...anything beyond that is guesswork! Which, granted, a lot of this is.

It's odd if Buffalo used family members to make up their control group when MS and apparently CCSVI is hereditary to a degree. I would like to see the data on the controls after excluding all family members of MSers!!

[MaggieMae]

I also read somewhere that Buffalo used ultrasound for the first 500, but not venography. Maybe with the next 500, Buffalo will see a higher rate of stenosis.