This Is MS Multiple Sclerosis Community: Knowledge & Support

Thanks Marcus,
Just keep the links coming. This is all wonderful press. The press conference today should be interesting too.
Bobbi

There is a link in bold characters for CCSVI, but it doesn't work. When you click on it you obtain the following message: The page cannot be found.

not sure what you are referring to, where is that link?

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

On the main page, last sentence, in bold characters:

www.charityintelligence.ca

I checked one more time and the link is now working.

oh i see, before i thought you meant somewhere in this thread.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

That was me. I'd be happy to answer any other questions about the workshop, if anyone has any..

hi

I would like to know, were there any news regarding the buffalo study? what was dr. Zivadinov talking about?
thank you in advance
alex

did the speaker from Buffalo give away any info on how the results of their study?

Hi Ed, I am interested in finding out details on the video recording, if you are aware of a time frame when the file will be posted?

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

excellent, hope you do not mind me posting your message? did you get the impression that CCSVI is going to become the answer everybody has been looking for in regards to the cause?

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STAY REAL MY FRIENDS

dx 1989, spms

Can you explain, in a few words, what's the Jordan experience? Thanks

I was there as well! It was amazing and I briefly met Dr. Zamboni, very nice man, and Dr. Zivadinov from Buffalo. He advised there will be a major press release Wednesday. I believe, according to their newsletter, that they will be announcing they are to be the first centre on North America offering this diagnostic testing - $4500US. Realistically you may be able to get tested, but still unable to get the treatment.

I agree that with all the academic professionals there, from around the world, the doctors who are denouncing this theory can't ignore the astounding statistics coming out - 95% in Poland. And come on, the country Jordon is doing this and finding exactly what Dr. Zamboni found yet we're (Canada) is still saying oh no, it's got to go through animal testing blah blah blah.

I did find it interesting that it was somewhat implied that Canada is further behind in this research than other countries and yet we have the highest rate of MS patients.

Glad to see someone else was at this amazing collection of researchers discussing CCSVI.

CBC story out today

http://www.cbc.ca/health/story/2010/02/ ... mboni.html

Italian doctor heightens interest in MS cause
Last Updated: Monday, February 8, 2010 | 6:31 PM ET Comments0Recommend18
CBC News
This scan shows blood flowing through veins in the neck of a patient with multiple sclerosis.This scan shows blood flowing through veins in the neck of a patient with multiple sclerosis. (CBC)

The Italian doctor whose unconventional thinking on the cause of multiple sclerosis is in North America to drum up interest in testing the idea.

Most MS specialists believe the condition is an autoimmune disease caused by immune cells attacking neurons in the brain and spinal cord, leading to inflammation and damage such as paralysis.

But Prof. Paolo Zamboni's idea is that a narrowing of veins in the neck interferes with blood draining from the brain, allowing iron from the blood to build up in the brain and cause a condition known as chronic cerebrospinal venous insufficiency (CCSVI).

Asked about skepticism in the medical community, Zamboni, a professor of medicine at the University of Ferrara, told reporters in Hamilton Monday: "My suggestion is to investigate patients as soon as we can, not to simply criticize. Look and confirm the data."

Zamboni was in Hamilton for two days of meetings. On Sunday, researchers from Jordan, Poland and Buffalo presented their preliminiary findings, which were not released publicly, on using magnetic resonance imaging to look for vein blockages.

Zamboni believes CCSVI is one of the causative factors in MS, not the only cause. Researchers don't know if CCSVI happens just in MS patients, he noted.

To find out more, a team at St. Joseph's Healthcare in Hamilton, Ont., hopes to recruit 200 people for a controlled study — 100 with MS and another 100 healthy people. Investigators will also focus on different types of MS, searching for any differences that patients may have in their blocked veins.

There is a debate within the medical community in Canada about whether there is enough evidence to try using surgery to open up the blockages in patients with MS.

"What the techniques would be have got to be defined yet, so this is early days to understand the association of this very interesting observation of Dr. Zamboni," said Dr. David Higgins, president of St. Joseph's Healthcare.

Tuesday is the deadline for researchers who want to apply for funding from the Multiple Sclerosis Society of Canada. The society will make $100,000 available for each of two years, and will decide which proposals to fund in a few months. The other known applicant is the University of British Columbia.

Read more: http://www.cbc.ca/health/story/2010/02/ ... z0eznG0TSp

_________________
STAY REAL MY FRIENDS

dx 1989, spms

>I would like to know, were there any news regarding the buffalo study? >what was dr. Zivadinov talking about?

As MSchick mentioned, it sounds like there'll be some exciting news coming out next week. Dr. Zivadinov couldn't say too much because the news is embargoed until the press release is issued, but the impression he gave was pretty positive. He also talked about MRV, as I mentioned earlier, and how he believes it's not as good as Doppler ultrasound for detecting CCSVI. On the MRV, you can often see blockages when in fact there are none (it could just be a piece of one of the cervical vertebrae temporarily compressing the vein), and sometimes you can can't see blockages when in fact they're present. Dr. Haacke was a bit chuffed about this, but obviously this is still a developing field and it'll take some work to figure out the best method of imaging.

Dr. Zivadinov also mentioned the finding that in MS, the brain's ventricular volume appears to increase with disease progression, and he believes (as does Dr. Zamboni, I think), that this reflects a backup of cerebrospinal fluid, which itself is caused by the reflux and blockage in the veins. Basically, it's kind of like stringing a leaky garden hose over a swimming pool. If the flow in the hose is good, a little bit will leak into the pool. If the flow is blocked, a lot more will leak out, and the pool will fill!

>Hi Ed, I am interested in finding out details on the video recording, if >you are aware of a time frame when the file will be posted?

No idea, sorry!

>excellent, hope you do not mind me posting your message? did you get >the impression that CCSVI is going to become the answer everybody >has been looking for in regards to the cause?

No problem! My impression is that the symptoms of MS are pretty complex and varied, and that CCSVI seems to be the cause of a good deal of them, mostly the ones that clear up after the veins are unblocked. (Dr. Salvi made a point of mentioning that in the study that was published in the JVS, all the patients who didn't have a restenosis were relapse-free, and only the patients who had restenosis developed further relapses. That, I think, is one of the strongest pieces of evidence for CCSVI as the cause of symptoms in RRMS.) I think there was a feeling that even though there's good evidence that CCSVI causes the more deep-seated brain lesions that don't heal in the short term after treatment, the mechanism still needs to be worked out in order to be truly convincing. And the iron research that Drs. Haacke and Zivadinov presented is helping push things in that direction.

>Can you explain, in a few words, what's the Jordan experience? Thanks

Sure. Basically, they did a study of 20 MS patients and 20 controls. They did Dopplers on all of them, and found reflux and turbulent flow in the patients and not in the controls, in accordance with the Zamboni criteria. One patient had reflux that persisted for 90 seconds, which is really striking. They also did venography and some Liberation procedures with some success, but it didn't appear to be the main focus of their study.

One interesting point that was emphasized by Drs. Zamboni and Simka (and others) is that it's almost impossible to conceive that MS would _cause_ the lesions they saw in the veins. They saw upside-down valves in the jugulars that would, as Dr. Zamboni said, "work perfectly -- if they were in the femoral vein!" Dr. Zamboni also mentioned that the CCSVI lesions appear to be very similar to similar to the phenomena knows as truncular venous malformations -- basically, malformations in the veins of other body parts that looks very similar to the malformations seen in the jugulars and other head veins. I think that he thinks that CCSVI (at least in the jugulars) is just another form of venous malformation that happens to be downstream of a pretty important organ!

Likewise! My medical school is only an hour and a half away from Hamilton, so I figured it would definitely be worth the trip. And it was.