This Is MS Multiple Sclerosis Community: Knowledge & Support

Wow...went to my first ms society dinner to listen to Dr. Cohan, the director of the ms center in portland talk. It was pretty basic stuff until someone asked hime about ccsvi. Aside from making fun of Zamboni's name he said that "Zamboni claimed to cure everyone, including his wife with ms" He said the study at the university of buffalo was rigged because the results depended on how much pressure the tester would put on the vein.
In other words, he knows nothing or he lied.
I don't mind that the ms society disagrees with this approach but at least the physicians could get their facts straight.
the free food wasn't bad.

Incredible!.......and this thing is the Director in Portland? This society is supposed to be an advocate for us. Instead, they are too influenced by the political and big pharma.Facts seem to dictate that CCSVI has profoundly improved the lives of many people who have undergone the procedure. Yet all this gorilla can do is dole out a pack of lies! If he doesn't know pro's and cons from tests, he should simply say so and shut his yap. To be lazy and simply slander Zamboni and his theory is sad. We have MS and with time, we get worse. There is in urgency that needs to be addressed with an openness. This ape is not helping us get relief or go forward. I'm disappointed in his response also because as our advocate, it should be his business to know. Unfortunately, I've heard this story or similar variations, from all across the county. So...... do I think they are preoccupied by other interests besides MS? Yes. Are they shills for big pharma? Maybe. Do I think they are doing their best to find a cure for this disease? No. Would I give them my money through donation or fundraiser? No.
Question: Does anyone know if there are members on the MS society board or higher ups who actually have MS?

Pardon my language, but what a fucking idiot. What an ignorant and ill-informed comment to make. If Dr. Zidanov is exploring this theory, why would he say that the study is rigged? Does he think Zidanov or the staff aren't properly trained or qualified? That just pisses me off to no end.

Good thing I wasn't there. I would have jumped up and interrupted him. He doesn't deserve to have M.D. after his name.

I might have jumped up and occluded his jugulars for him.

Perhaps when fish is served at the next dinner, and he chokes on a bone, we must do a double-blinded study to see what the best course of action might be. A "sea bass" bone might need a different action than an orange ruffy bone, or a sole bone. How would one know that it is a fish bone that he is choking on, and not a truffle, or a piece of scalloped potato? Is he even choking? It might be an anaphylactic reaction to a peanut, or a shrimp - in which case Rebif might be the best course of action...

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My name is not really Johnson. MSed up since 1993

For too long, Dr. Zamboni has been target of personal attacks ... pardon if people dont like this, but its my feeling that these people dont think that anything credible can happen outside western America ...

That's a cracker, Johnson. Maybe we should try various fishbones in mice first.

Zivadinov must be terrible at rigging stuff considering his positive %s were way lower than Zamboni's and Simka's.

You are too funny Johnson - I loved the poignant analogy and laughed out loud!

I would think that the University of Buffalo, or Dr. Zivadinov's lab, would have a legal cause of action for those publicly made comments. Assuming they are not true (I don't see how they could be true), attempting to defame Dr. Zivadinov's research ethics could affect his success in being awarded further funding (although I would think that most people could see through those remarks). Cohan should be forced to issue an apology.

Johnson, thank you for the huge laughs while reading your post!!!!!!

SBR487, you're right - realizing that most of these naysayers suffer from a superiority complex...and cannot believe that anyone outside of North America could have found an answer to MS.

What's really funny is how Italians respond to North Americans making fun of the name "zamboni." They think we're morons...

Via Zamboni is the name of the street which is the main drag thru Europe's oldest university- the University of Bologna. Zamboni, to the Italians, connotes academia, intelligence and a quest for knowledge.


http://www.eng.unibo.it/PortaleEn/Unive ... efault.htm

love the bone choking image....
How would this guy explain my husband's MRV....no pressure on any veins there...just 2 blocked jugulars.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

You nailed that one Johnson oh so beautifully...


z

That's funny, when I called
L'Institut de réadaptation en déficience physique de Québec (IRDPQ) to renew my Copaxone (december 09), I ask the nurse, I've you heard about CCSVI? You know what was the answer?

[b]''Zombini (laugh after), Neuro says more research needs to be done'' /b]

After, I was so upset and dared not to ask to my neuro about it.

This kind of reaction is not professional and after that I tried to find infos by myself not relying anymore in those guys.

Oh yeah, and what the naysayers tend to forget (selective memory anyone?) is that Zamboni's right hand man is...gee....a NEUROLOGIST! A brilliant one at that who gives a damn about his patients, but equally important is dedicated to ending suffering...something some have forgotten in their small time 'joking' over someone's name. How infantile, how pathetic.

z

Why in the world would BNAC "rig" the doppler testing ? It would be professional suicide !! What an asinine remark to make. Other sites than Buffalo are testing CCSVI (e.g. Georgetown) and will help support or refute the BNAC studies. Maybe we should ask this neuro if Teva "rigged" the testing on Copaxone to sell more product.

ozarkcanoer