This Is MS Multiple Sclerosis Community: Knowledge & Support

The following is just some of Zivadinov's statements after the Buffalo results preliminary publication:

The fact that so many more MS patients had the condition is a significant finding, said Dr. Zivadinov. He also noted, however, that the vein narrowing was more common in people at more advanced stages of the disease.

"That would be against CCSVI being a primary cause of MS, although clearly this can't be determined yet," said Dr. Zivadinov. "This will be very difficult to determine: what is the chicken and what is the egg."

or,

The University of Buffalo scientist who headed the study acknowledged the findings cast some doubt on the suggestion that a narrowing in neck veins helps trigger MS, although he says it clearly shows there is a significant link between the two.

Yet, i read somewhere else that he suggested not to underestimate the results and that there is more to this story.


[[/b]

But, please, as much as i try to think WHY his newsletter was so promising just a few days ago i just DONT get it. How on earth could he do that? Is he seriously confused?
Is it the media making their own interprentations?
I know we all have the same question, but we are trying to interpret the data they published and noone has touched this angle.
Freedman and i am sure others will follow, started to hit hard. Abd it is only natural...

Any thoughts?

It brings to mind the Supertramp refrain I hear, only what I want to hear... Zivadinov did seem excited in the newsletter, but perhaps he was as excited at the prospect of hundreds of thousands of MS sufferers on the doorstep clamouring to pay $4500 a pop for screening as he was at finding answers.

The results from BNAC are nebulous at best, but there is something there. As someone else wrote, 'if there was a 56% diagnosis and cure rate for breast cancer'...

It is still early days, though it seems like forever. Don't sweat the minutiae.

_________________
My name is not really Johnson. MSed up since 1993

Yes, i thought about that too. Is it all about money then? Dont think so...
Among others he said that they will apply so the tests should be avail for free in about 18 months time and that they will help training other centers to master the CCSVI diagnosis.

On the other hand, a "patientslikeme" member wrote:

The CCSVI percentage mystery has been solved! Buffalo used older technology and found about 56% of MS patients had the condition. Zamboni designed a newer process -- now it's over 90%!

About the 90% of MSers have CCSVI quote:
I saw one video where Dr. Zamboni said on camera that with the newer technology that he helped develop, the rate of CCSVI was at least 90%. There have been print articles that have cited 90 - 95%, but not as a direct quote from a doctor. I've been searching trying to find this on-line video and, so far, I can't find it anywhere. But, honest, I saw Dr. Zamboni on camera quoting the 90+% statistic for MS patients.
I'll keep looking and will post it when I find it again.

That would be an interesting view. Unfortunately she doesn't mention when this video is dated.

look at his following statement:

Why his wife is treated with autoimmun medication?
Does´nt he believe in his own theory?

Is there a conflict ongoing behind the doors between Dr. Zivadinov and Dr. Zamboni, the typical fight who comes first ?
Why there are no comments on the findings originated by themselves they just communicate over the press. They bring us into the situation where we have to speculate, its a kind of unfair after all.

[/quote]

Exactly,

i for one remember Zamboni vividly claiming that his wife is clinicaly free of symptoms etc.
Is it because of meds? Liberation? WHAT????????????????

My guess is that - Until iron excess binding to myelin is eliminated; it is wise to slow down the immune system

It probably takes a looooooooonnnng time to get rid of that...? So why leaving the immune system attack; since it is the catalyzer of attack...?

Why other deseases are not treated with autoimmunmodulators with the same inflammation process, like parkinson, alzheimer, coronary heart desease, respiration deseases etc. etc.

Why he is not talking in public about the treatment of his wife and what that implicates. This is the first time I´ve heard of. Why does´nt he made this statement public to all who were treated with his "liberation procedure". That you have to stay with autoimmun therapy. For what if there isnt no reflux anymore. So to me it would make more sense if he puts his focus on delation of iron, repairing the blood brain barrier and myelinregeneration.
So I dont know what to think about this, just confusing.

he HAS to say stay on the meds at this point. No if's, and's, or but's about it.

Think about the sensitive political nature of the situation coupled with the not-firm foundation of his theory.

It is already quite easy to label the good doctor as an unethical crackpot and dismiss CCSVI. Top neurologists and less-than-stellar newspaper columnists are already doing just that. Imagine if he added in, "and you should drop the medicine that has been 'proven' to offer the only help."

Having heard and watched Dr. Zamboni less than a week ago, and having taken extensive notes, I feel compelled and confident to point out that he takes care to explain that there is a relationship between CCSVI and MS and that it is not possible for MS to cause the things we see in CCSVI. How does MS cause an inverted valve, for example.
I caN quote more extensively from my notes, but when I saw hat statemnet from the NMSS it really gave me pause as it does not accurately reflect what the doctor has been saying publicly in speaking engagemnetbsand interviews everywhere else. It makes me wonder about the entire statement and the way his answers were interpreted and trimmed.

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

Reading all the above, i see we are again trying to read between the lines.
Zamboni said this, Zamboni said that...
It's Zivadinov that made the world wondering by publishing results that did not correlate with the nature of his previous newsletter.

This is what makes me sick.

I dont know what his study really means we cannot do otherwise than wait for the official paper. I still believe CCSVI is the key.
I just dont get how you can lift millions of patients to the sky just to drop them a few days after.

It is a question of ethics.
And it's a really hard one to answer... i know.

the dude has A+ TALENT he is definetly not confused / these people here r unbelievable and working like crazy / we r going in sun am / who works sun AM S / STAY STRONG ALL -----PEACE

Costumenastional (whatever that means),
You are a bit manic...excited one day, angry the next. If you are a scientist, focus on the numbers...personally, I am not obsessing over them. For my husband CCSVI IS 100%. He had a jugular that was .5 mm which was widened to 10mm! Unfortunately, he has some other missing veins. I am glad to know this and I have the feeling we are only at the beginning of learning more about CCSVI. At least we are not stagnating on the auto-immune pile of research and drugs.
If you yourself believe in the theory, then keep moving forward, but don't expect an instant cure/ explanation to be handed to you on schedule.

Umm ok

It's CostumeNational actually, and it s just a brand of Italian clothing.

You are right, i am not just a bit manic, but totally manic. Forgive me if i make you anxious, i dont want to.
But have in mind that most of us havent got the chance to be tested for CCSVI so we have the right to get crazy when bombed with all kinds of misleading information regarding our life.
I promise you that when they find my veins blocked i ll stop giving a shit for the numbers too.

Peace out.

he is one supporter of CCSVI and is backing with pure research ...
He talked about submitting as a late breaking news and asking for research grant. I think eventually he wants to prove CCSVI is credible ...

I wish they had a script writer in Buffalo, to take away what came off so poorly presenting results on so promising a theory. I am sure that the vascular surgeon world will throw a major influence into where the research goes. I think zamboni has been walking on eggs to try and not get more of a negative from the m.s. neuros but his true talents and support will be from the vascular boys. I think we still have tons to be positive over.