Live Zamboni / Zivadinov CCSVI web forum - April 14th 2010

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

Postby AMcG » Thu Apr 15, 2010 2:08 pm

Thanks for the info about Dr Lisak. And the explanation of the Cuffs. I couldn't make out exactly what he was saying.

I thought cognitive dissonance occurred between conflicting ideas in one person's head not between two? But I may be wrong.

But I would call what went on between Zamboni and Lisak as simply a scrap. It was clearly an attempted put-down from Lisak. And it was really good to see not just how well Zamboni replied but also how keen Z was to take him on.

Edit: It has just penetrated my fuddled brain that your cognitive dissonance means my scrap. Apologies for failing to appreciate your wit. I am clearly at fault for not expecting irony from an american. Well done.
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Postby fogdweller » Thu Apr 15, 2010 4:06 pm

cheerleader wrote:Anyhoo...it was a fine example of cognitive dissonance.
cheer


In a sense, you can't really blame the neurological community. After a very long and arduous education, and years of practice where I told numerous sufferning patients that we didn't know much about MS but we did know it was an auto immune disease, and billions of dollars and hudreds of highly trained man-hours by researchers, I too would be reluctant to say, "opps, I have been barking up the entirely wrong tree."

Did you notice how the neuro from the MS society led of with an unequivicoal statement, "MS is an autoimmune disease>" What a crock.
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Postby Billmeik » Thu Apr 15, 2010 4:41 pm

you know I don't see why the iron depositions are necessary.

Just the trapped blood can cause damage enough?
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Postby Billmeik » Thu Apr 15, 2010 4:56 pm

duplicate
Last edited by Billmeik on Fri Apr 16, 2010 10:13 am, edited 3 times in total.
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Postby Mutley » Fri Apr 16, 2010 9:34 am

cheerleader wrote:Anyhoo...it was a fine example of cognitive dissonance.
cheer


Absolutely.

I’m afraid that we may well have to witness a few more Neuro’s standing on their chairs with their fingers in their while singing “la la la, I’m not listening”, before they are willing to take a look at this.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby mshusband » Fri Apr 16, 2010 10:22 am

cheerleader wrote:
Mutley wrote:In the Q&A session at the end, the first question (which didn’t actually end up being a question at all) was from a man who disagreed with Zamboni’s theory about how Iron deposits could occur in the brain in response to CCSVI. Does anyone know who he was, and what his field may have been? Neurologist maybe? :wink: .


That was Dr. Lisak from Wayne State, head of the neurology dept. which wrote the CCSVI piece in the Annals of Neurology.

His point is that Dr. Zamboni's theory of pathology in MS is incorrect....and it is NOT like that seen in venous insufficiency in the legs. MS is autoimmune. period. Dr. Zamboni asked, why then the fibrin cuffs (a hallmark of venous hypertension) and the ring like iron depositions in the lesions surrounding the veins. Zamboni also said that the autoimmune theory makes no sense when studying fresh lesions upon autopsy....there is no immune activity in brand new lesions (Barnett paper?)
Anyhoo...it was a fine example of cognitive dissonance.
cheer



You know what ... Dr. Lisak IS RIGHT.

MULTIPLE SCLEROSIS IS AUTOIMMUNE ... PERIOD.

BUT, why can't they accept that CCSVI MIGHT BE WHAT CAUSES A SINGLE SCLEROSIS, AND THEN MULTIPLE SCLEROSIS (THE AUTOIMMUNE RESPONSE TO CCSVI)???

WHY CAN'T THEY LOOK INTO THAT.

We're not saying CCSVI and MULTIPLE SCLEROSIS ARE THE SAME THING Dr. Lisak & other Neuros. We're saying CCSVI is likely what's causing the sclerosis and autoimmune response.

GET IT? THIS ISN'T DIFFICULT.
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Postby Billmeik » Fri Apr 16, 2010 10:37 am

really those who say ms is autoimmune period are denying data that's been building for years. Like when the 14 year old died of ms in 2004(ish) and they were able to do a very fresh autopsy. They found no evidence of the immune system attacking itself.

Now with ccsvi the state they found that body in minutes after an attack makes more sense....
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Postby mshusband » Fri Apr 16, 2010 10:52 am

You're missing the point ... MS is autoimmune.

CCSVI is NOT MS.

CCSVI is VENOUS.



It's like those law school tests ...

IF MS is not CCSVI, and MS is not venous, what is MS? Autoimmune
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Postby Nunzio » Fri Apr 16, 2010 11:03 am

I think this is just indoctrination at work.
They learned as young medical student that MS is an autoimmune disorder and then, after they graduated, they treated MS patient with medicine for autoimmune disorders for many years. So now it is very difficult for them to accept a totally different explanation for the cause of MS.
As some famous person said: fist they ignore you, then they make fun of you, then they fight you,then your idea become accepted, so we should be happy we are already at the 3rd step.
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
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Postby fogdweller » Fri Apr 16, 2010 11:44 am

mshusband wrote:You're missing the point ... MS is autoimmune.

CCSVI is NOT MS.

CCSVI is VENOUS.


CCSVI is a clearlly demonstrable venous problem, true.

MS is a differerential diagnosis, that is when we have a number of symptoms and have ruled out all other causes, then "voila", it is MS. MS is a description of certain physiological conditions, to wit, demeylenated plaques on the brain. Nothing else. We do not know the cause. We have thought for 20 years that it was autoimmune, but until we can show the etiology, we do not know difinetively that it is autoimmune.

Recent evidence, including the autopsy results discussed Billmeik in the entry immediately above this items , and another pathology study also from Australia show that the demeylination precedes the immune response which was a scavenging response to the cellular debris. http://www.ncbi.nlm.nih.gov/pubmed/2003 ... inalpos=30 (Very dense reading but pretty well done study).

This may explain why we have has such poor results from the vast numbers of immune suppression methods attempted ... MS is not really an autoimmune disease at all.

The few positive results we do have from the interferons only provide supression of the exacerbations and do not seem to slow or stop progression, which is the real problem.

I was very disappointed in Dr. Aaron Miller when he opened his talk with the unequivicol statement of the cause of MS, "MS is an autoimmune disease." I was also very disapponted when he said that we have several very effective drugs. I have Primary Progressive MS (as does 20% of pwMS) and have never had an exacerbation in my life. Those drugs are of no use to me at all, and no help to anyone prgressing. Even to those with the RR form of MS, they only reduce the number of progressions by 40%, slightly statistically significant over placebo. Not really an effective treatment in most medical practices.
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