Response of Italian MS Society

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby scorpion » Sun Oct 18, 2009 6:27 pm

Ok now I understand. Every neurologist who questions CCSVI is embarrassed they treated patients for years with medications that don't work. How embarrassing. Every neurologist who questions CCSVI is indebted to special interests. Could it be it just does not make scientific sense to them? Why do you guys get so angry when someone questions CCSVI????? Maybe Zamboni has something to lose by CCSVI being disproven????? Maybe there is someone named Dake in California getting really rich from his "corrective surgeries?" No way!!!!!! Thank God for Zamboni and Dake, the two "true" neuros who only really care about people with MS and not about their pride..
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Postby Rokkit » Sun Oct 18, 2009 7:38 pm

Lyon wrote:...odds alone dictate that it's not a couple of percentage points away from 100%.


I'm not trying to be combative, I just don't see where you've offered anything that supports this claim. But you could well be right, I can't prove you're not.

I look forward to the first "unblinding" of the Buffalo study in November. Hopefully it will clear up, one way or the other, this particular criticism of Zamboni's paper.

Lyon wrote:Not to generalize because there are objective people involved with CCSVI but what I've stated was nothing more than obvious until some people decided that desperately twisting the "facts" to prove the merits of CCSVI was the highest goal.


I guess the implication here is I'm not one of the objective people. That's very true of course, as I sit here with stents in my jugulars, I'm obviously not unbiased. I don't think I'm trying to twist any facts though, I'm really just enjoying using my brain to try to unravel some of this while we wait for more definitive info. I'm not trying to get under anyone's skin.
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Postby Lyon » Sun Oct 18, 2009 8:26 pm

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Postby whyRwehere » Mon Oct 19, 2009 12:52 am

The problem is, Lyon (Bob) just likes to argue. It's not really whether people can prove one thing or another...he just likes to wind people up and argue. I personally don't find his arguments witty, potent or relevant. Just a BORE.
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Postby Lyon » Mon Oct 19, 2009 5:25 am

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Postby Rokkit » Mon Oct 19, 2009 8:40 am

Lyon wrote:ONLY the diehard CCSVI proponents are suddenly claiming that MS diagnosis is 100% accurate.


I haven't seen anyone claim that. I'm only pointing out that it's not unthinkable that the rate of misdiagnosis in CDMS is low enough that Zamboni might have had 65 accurately diagnosed.

Yes, I am persistent on this point because in my opinion your criticism, although a very valid point, is still weak enough (without any data to back it up) that it deserves to be challenged.

You are right that your point was "only obvious" before. So consider this: If it was obvious to you, it was certainly obvious to Zamboni, yet he published it anyway. I would think that makes him either an idiot, or very confident.
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Postby Lyon » Mon Oct 19, 2009 2:54 pm

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Postby cheerleader » Mon Oct 19, 2009 3:24 pm

Dr. Zamboni's nine published papers in the last three years:

"The big Idea: Iron-dependent inflammation in venous disease and proposed parallels in multiple sclerosis", 2006
in "The Journal of the Royal Society of Medicine" Vol. 99, pp. 589-593


"Intracranial Venous Haemodynamics in multiple Sclerosis", 2007
in "Current Neurovascular Research" ed. 4, pp. 252-258


"Doppler Haemodynamics of cerebral Venous Return", 2008
in "Current Neurovascular Research" ed. 5, pp. 260-265


"The value of cerebral Doppler venous haemodynamics in the assessment of multiple sclerosis", 2009
in "Journal of the Neurological Sciences"


"Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis", 2009
in "Journal of Neurology, Neurosurgery, and Psychiatry"ed. 80, pp. 392-399


"Rationale and preliminary results of endovascular treatment of multiple sclerosis, the liberation procedure", 2009
in "1978-2009 -31 years- Vascular and Endovascular Controversies Update" 31° International Symposium - CX Charing Cross, pp. 71-79

"Endovascular Treatment for Multiple Sclerosis", maggio 2009
in "Vascular News" ed. 80, pp. 392-399

"Venous Collateral Circulation of the Extracranial Cerebrospinal Outflow Routes"
in "Current Neurovascular Research" Volume 6, Number 3, August 2009


"Anomalous venous blood flow and iron deposition in multiple sclerosis"
in "Journal of Cerebral Blood Flow and Metabolism", September 2 2009


http://www.fondazionehilarescere.org/en ... zioni.html

And now, back to the Italian MS Society....
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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Rokkit » Mon Oct 19, 2009 3:38 pm

cheerleader wrote:And now, back to the Italian MS Society....


Yeah, sorry about that. Totally my fault.
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Postby patientx » Mon Oct 19, 2009 3:44 pm

Lyon wrote:but it would be a great help if he would just put his reasons for confidence on paper, and that's really not too much for the rest of the world to ask.


I would have to agree, Bob. The 100% thing seems to be a big sticking point for skeptical neurologists, and it would be nice if this, among other issues, was addressed.
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Postby Lyon » Mon Oct 19, 2009 3:58 pm

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Postby cheerleader » Mon Oct 19, 2009 4:26 pm

Here's Dr. Zivadinov (SUNY Buffalo) speaking about CCSVI. There is the unblinding of the first part of Jacobs study next month...(maybe your wife's testing will be part of the first results, Bob?)

Dr. Zivadinov speaks about CCSVI

The Liberation paper is "in press" at the Vascular Journal. We just have to wait as the research unfolds. I was just showing how much work has gone into this already. As Dr. Zivadinov said in Bologna, there will be thousands of papers regarding CCSVI in the next ten years.

Back to the Italian MS Society (back OT)....if people want to wait for further studies and use caution as the MS Society suggests that's great! If they can wait two, ten, twenty years, they are very fortunate. If others want to be tested for CCSVI now and talk/write about it, that's their right, as well.
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Postby Lyon » Mon Oct 19, 2009 4:33 pm

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Postby patientx » Mon Oct 19, 2009 5:03 pm

Rokkit wrote:
cheerleader wrote:And now, back to the Italian MS Society....


Yeah, sorry about that. Totally my fault.


Funny, when I look at the main page for this forum, I only see one name listed as moderator.
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Postby mrhodes40 » Mon Oct 19, 2009 5:05 pm

http://www.neurologyreviews.com/sep00/n ... emmas.html

Finding alternative causes in patients with classic symptoms and no atypical features was, in Dr. Cohen's experience, "very unusual." For patients in whom multiple sclerosis has already been established, he cautioned colleagues to be vigilant to overlying pathologies that might be contributing to symptoms and to always evaluate the main source of a patient's disability.



My neuro confirmed that it is extremely unusual for a person who is CDMS--meaning specifically the pattern is established and typical (newly diagnosed persons are different) to discover later they do not have MS.

The Z study had inclusion criteria for CDMS...
(sorry I was working on this already)
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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