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Treatments, Therapies and Alternative Medicine
 MS Discuss :Multiple Sclerosis Discussion Forum :Treatments, Therapies and Alternative Medicine
Message Icon Topic: CCSVI TESTING Post Reply Post New Topic
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Quote brian Replybullet Topic: CCSVI TESTING
    Posted: 23 Jun 2010 at 7:41am

The National MS Society:

To whom it may concern,


(A somewhat ironic opening to this letter considering the number of calls I made to the national office and the fact that none were returned.)


I find it very difficult writing this letter.  I have been on the board of our local MS chapter in the Laurentians for a number of years.  During that time I have come to know the difficulties incurred by those suffering from multiple sclerosis.  I myself was diagnosed with MS more than 20 years ago.  Over that time and especially since joining the local board I've done my best to raise as much money as possible, to support the multiple sclerosis society and the various activities it promotes. Like almost everyone I believed that research should be predicated upon the fact that MS is an autoimmune disorder.


Obviously, what has become foremost in the minds of many with MS is a new theory based upon the fact that multiple sclerosis may not be an autoimmune disorder, but may be caused by a constriction or a narrowing of certain veins.  This results in iron deposits, which in turn leads to damage.  Like any new theory, one has to take it with a grain of salt.  I am a realist.  Any disease that does not have an obvious cure can often result in many people claiming to have found the answer that everyone is seeking.  While CCSVI may not be the cause of MS obviously it is worth investigating.  Perhaps I should not say obviously, since it seemed to have taken quite a bit of pressure for the MS society to actually come out in support of some research into CCSVI.


Without wanting to sound overly paranoid I believe I know the reason why the MS society initially seemed  to be very reluctant to even acknowledge the fact that Dr. Zamboni’s research merited any further study at all.  From what I've come to see the neurologists, researchers and the MS society are acting in almost a defensive manner.  It is as if the fact that someone is suggesting that the research may have been going in the wrong direction is some kind of insult.


Even now, with the grants that have been announced, the MS society still seems reluctant to support those who they should be backing the most, that is, those of us with multiple sclerosis.


For some reason, people are being told they should not seek out testing for CCSVI.  Why that is, I do not know.  In Québec, the province where I live, there's only one place where one can be tested for CCSVI.  It is a private clinic in Montréal.  Obviously, since it is a private clinic it is not supported by Medicare and one has to pay the $400 for the testing.  The test itself is a scan that is completely harmless.  There is absolutely no danger involved to the person getting the scan done.  Even so, the Québec College of Physicians wrote a letter to the clinic, telling them to stop doing the scans on MS patients.


To quote the neuroradiologist running the clinic, "he was stunned to learn he could no longer perform the tests.” He also stated, "it is the first time we've ever been told we couldn't scan a body part.”  The College of physicians has decided that MS patients cannot have their necks scanned.


 I am astounded that the MS society has not come out in total support of people with MS wishing to be tested.  It only confirms to me, how entrenched and enmeshed the MS society is with the medical establishment.

 The MS society's position on testing reads as follows, "The CCSVI concept does not have a proven connection to MS at this time. As well, specialized equipment and training is needed to test for the condition. For these reasons, CCSVI cannot be easily tested for or treated at this time.

Additionally, for safety reasons, the MS Society recommends that people with MS be examined or treated for CCSVI only within an established research protocol where suitable safety and outcome monitoring is assured.

Between the MS Society of Canada and the U.S. National MS Society, seven studies have been funded to research CCSVI's relationship to MS. Please note enrollment is limited and these studies are aimed at achieving better understanding of the relationship between CCSVI and are not designated to treat CCSVI”.


Why has the MS society never publicized the fact that there are many doctors, including neurologists who believe that drugs such as the interferons do absolutely nothing to combat multiple sclerosis?.  For about nine years.  I was taking beta interferon, a drug, which costs approximately $1700 a month.  When I first started taking it, I could walk perfectly well with a cane.  Nine years later, I was in a wheelchair.  My neurologist at the time, who is the head of neurology at a large Montréal hospital, said that he believed that perhaps the pharmaceutical companies producing these very expensive drugs had manipulated statistics in order to show they did anything at all to combat the disease.



The home page of the MS society should have a statement declaring and demanding that the rights of those with MS should be the same as those with any other disorder.  No one is asking for unsanctioned surgeries or other procedures, which could pose some danger but I believe only that our human rights should be respected.


Because of the fact that I've been unable to resolve this issue I find that I'm left with no choice but to resign my position on the local board.


Yours truly


Brian Segal

Piedmont Quebec

P.S Perhaps you should consider altering the banner on your web site since advocacy is obviously something you do not practice.

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Siberian Husky
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Quote Siberian Husky Replybullet Posted: 25 Jun 2010 at 3:18pm

Hi Brian


Thank you for taking the time to express your views and concerns. I would like to try and provide some information on a few of the issues you have raised about CCSVI in your post.

The MS Society of Canada believes that the topic of CCSVI opens up new avenues of research in MS including the possibility of new treatments. While the early data are of great interest, it is important to acknowledge that the concept of CCSVI as a cause of MS, and the use of stents or balloons to widen veins as treatments are ideas that need to be replicated and validated in much larger well-designed studies. First, it will be necessary to understand the relationship between CCSVI and MS. If such a relationship is established, it will then be important to determine if and what intervention is needed. This work would include a clear understanding of possible benefits and risks as they apply to people living with MS who are planning to undergo treatment of CCSVI. The MS Society of Canada is closely monitoring all ongoing research related to CCSVI and will post new information on it’s website as it becomes available.


All current approved Disease Modifying Therapies have been researched, tested and proven effective in the treatment of MS before being recommended by the MS Society and, as the safety and health of people living with MS is the primary concern of the MS Society of Canada, it would be irresponsible to recommend a treatment for CCSVI without further research. 


Our call to the Minister of Health for $10 million in research funding reflects our commitment to the speedy translation of research into improved quality of life for people with MS.  The MS Society’s own CCSVI research competition also reflects this commitment.

I hope this additional information brings more clarity as to the scope of the Society’s advocacy efforts in support of people living with multiple sclerosis. I would like to assure you that the MS Society of Canada continues to stay true to its mission to be a leader in finding a cure for multiple sclerosis and enhancing the lives of people affected by MS while keeping the people affected by MS at the centre of our work.

I would also like to thank you for your contribution to the Laurentian Chapter. Your help was more than appreciated in the last few years. If you have any questions, feel free to call me.

Louis Adam, Executive Director – Quebec Division


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Quote strong Replybullet Posted: 25 Jun 2010 at 7:51pm
Hi Brian: I was diganosis with MS in Jan /2010 and I have been to a talk given by top neurologist in our city and I found that The MS Society is doing there best to support the research and the neurologist have a lot of questions that have to be answered before this CCSVI can be a cure or treatment. As the neurologist said it maybe only a piece of the puzzle. I would like for than anything to have a cure find for MS but what I hear on the topic of CCSVI has alot of questions left in my mind and before I get anything done I would lik more answeres. So in my mind the MS Society and all neurologist are doing their best. I myself know what it is like to struggle with MS each day. So it sad to see you give up your position Brian because I am sure there is people out there that need your help. Maybe you should think it over before you resign I am sure you helped alot of people and did alot of good work for MS. There will be a cure someday but we just do not know when.  All the best to you.  Strong
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Quote MikeH Replybullet Posted: 07 Jul 2010 at 1:54pm
Take a look at the thread I started in "over a cup of coffee"
it will answer many of your questions.

This year I had the opportunity of being the
spokesperson for our walk and this peaked my curiosity. I was surprised to see how easy it was to find the information all one has to do is use Google and ask the question.

It's sad however next year I'll be raising funds for my own research
Take Good Care
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