This Is MS Multiple Sclerosis Community: Knowledge & Support

We are doing a news story tonight about the fact that University of British Columbia and Vancouver Coastal Health plan to start a study on CCSVI..

Their study will be a collaboration between neurology, radiology, interventional vascular specialists and physics experts

It looks like the study will have two parts:
1) to see if the treatment works...
2. to develop an MRI protocol that gives an imaging biomarker of the existence of CCSVI in patients with MS, and (ideally) unequivocally identifies the location of the stenosis."

It is a much more aggressive study than we thought ..i.e. if they see stenosis they will treat it...



Cheers
Nick

thanks for the great news Elizabeth ....well done





Mr Success

Nick,

Thank you for the great news... Your coverage of CCSVI is invaluable to the MS community and I personally cannot thank you enough...

VIDEO: <shortened url>

STORY: <shortened url>

Jane Armstrong

Vancouver — From Wednesday's Globe and Mail
Published on Tuesday, Dec. 15, 2009 9:17PM EST


.The University of British Columbia has announced plans to begin patient trials to test a potentially groundbreaking method of diagnosing and treating multiple sclerosis, a disease that afflicts up to 75,000 Canadians.

Researchers have proposed launching a study involving 100 patients to test a theory that MS is a vascular disease that can be treated with surgery. It's the first research proposal in Canada to suggest evaluating the findings of an Italian doctor whose early studies indicate that multiple sclerosis might be caused by vein blockages that lead to a buildup of iron in the brain.

The findings of Paolo Zamboni have generated a great deal of interest among researchers and those with MS. Earlier this year, the Multiple Sclerosis Society of Canada appealed to scientists to follow up Dr. Zamboni's theories.

The proposed UBC trial, which would be done in collaboration with researchers at the University of Saskatchewan, is an answer to that appeal, said Anthony Traboulsee, medical director of the UBC MS Clinic.

Dr. Traboulsee said Dr. Zamboni's studies have caused both hope and anxiety among people with MS. They are hungry for a breakthrough, but realize the Italian doctor's findings are preliminary.

“They are very anxious about this,” Dr. Traboulsee said Tuesday in an interview. “MS is a lifelong disease. Young people are hungry for hope.” Because of the intense interest in the new findings, Dr. Traboulsee said the proposed patient trials must “take a careful” approach.

Unlike Dr. Zamboni's earlier studies, the UBC research plan will include a control group – which gives more heft to a study's findings – and will take place over a longer period.

In Dr. Taboulsee's proposed trial, researchers would closely examine participants' neck and stomach veins. The study group will include people with and without MS. Each participant will undergo three tests, including an ultrasound, a magnetic resonance imaging test and the insertion of a catheter. In that test, dye is injected to give researchers a closer look at the veins.

Only MS participants with blocked or narrowed veins will move on to the second stage of the trials.

Half that group will undergo a vein dilation procedure – similar to an angioplasty – to expand the vein, the other half won't.

The purpose of UBC's proposed research trial is to build on the knowledge uncovered by Dr. Zamboni, a professor of medicine at the University of Ferrara in Italy. His theory is that a condition that he dubbed chronic cerebrospinal venous insufficiency causes MS. The current thinking is that MS is an autoimmune condition in which the immune system attacks myelin, a fatty substance that coats nerve cells.

Dr. Zamboni found that, in about 90 per cent of people with multiple sclerosis, the veins draining blood from the brain were malformed or blocked, which led to a buildup of iron in the brain, which he theorized causes the neurological symptoms of MS.

Dr. Zamboni had 65 of his patients undergo an angioplasty to clear the blockage. Of those, 50 per cent reported no attacks in the next 18 months. In a group that did not have surgery, that rate was 27 per cent.

Multiple sclerosis is a degenerative condition that can cause loss of balance, heat sensitivity, impaired speech, double vision and paralysis.

UBC's trial still needs funding and approval from an ethics committee. The researchers will apply for funds from the MS Society of Canada, private donors and the Canadian Institutes of Health Research. Dr. Taboulsee said the study will cost nearly $1-million for equipment and staff.

Researchers including some at UBC have already been studying links between MS and iron in the brain, Dr. Taboulsee said. He said the latest findings are like another piece to a jigsaw puzzle. Previous studies have linked MS to, among other things, a Vitamin D deficiency and cold climates.

can some one tell me how i enroll my daughter in this study
right now she is asymotmatic and she is only 23 years old, so i think she would be one of the best candidates what would definitly benefit from enrolling
i reallly appreciate any info asap

smichel - they are not enrolling anyone just yet, as they are waiting for ethical approval, machine upgrades, staffing, etc.

I have no idea how they will determine candidacy, but you can bet that there are tens of thousands who want to be one. Age and relapse status may well be one of many considerations, but we have to wait.

Personally, I think I am THE PERFECT CANDIDATE, because I am 48 years old, have been RR for 16 years, think that I am going Secondary Progressive, and am in a 6 month long relapse, which has never happened before. Plus, I have red hair, and my kid loves me. Anonymous, who is 67, and has had RRMS for 36 years thinks she is perfect too. I think that my best chance is to pray a lot, and to get other people to pray for me.

We all need to keep on pressing, and work on finding other avenues of diagnosis and treatment of venous reflux into the brain, whether that causes our neurological problems, or not. Most sensible people would wonder how it cannot be the root cause of most of the problems. I am working to get to vein doctors, and am not terribly interested in the MS Clinic (unless they take me in the study).

It is probably good to let the neurologist know that your daughter would be willing to be in the study, though it's probably not necessary, as most everyone is willing, and they know that. I am looking to this study as my faintest hope in the near term, but it will accelerate as exponentially as it has in the last few weeks. We are not that far away from more answers, and relief, relatively. It's closer than I had hoped for before the W5 piece aired last month.

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My name is not really Johnson. MSed up since 1993

Johnson - you just might be a perfect candidate. As I recall in the W5 program some of the people Zamboni included in his study were currently in a "relapse" & they were able to offer, what I would call, invaluble info as some of their sysmptoms subsided as the procedure was done! ... parying for you ... & us all!

Thanks C3Glo. I would love to be a candidate, but we have no ideas of parameters yet. There could be all kinds of distinctions;

Taking MS drugs?
Smoker?
Other venous anomalies or CV problems?
Level of disability?
Proximity to study facility,
etc.

At the very worst, it takes 5-10 years (even that could be too optimistic). Last month, I thought that I would have it for the rest of my life. This month, I am pretty sure that I won't. I feel that I am in a "tough" position because I might have to decide whether to take risk of death over continuing and increasing disability. If I didn't have a 3 year old, I would be a lot more open to taking chances, but he is too young to lose me entirely. At the same time, he is too young to have an invalid father.

MS really has sucked for us all. But it will soon be in the past, I hope.

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My name is not really Johnson. MSed up since 1993