Is the MS Society now promoting CCSVI treatment for MSers?

It's hard to believe, but these "liberation testimonials" are on the web site of the MS Society of Canada: http://ccsvi.ca/story/16/it-is-so-unbelieveable-i-m-in-awe.html.  Have they truly done an about face on this issue?  An argument is raging in Facebook, where some of those who have been fighting against the MSSC to get CCSVI studied are understandably cynical and suspicious.  But could this be the actual turning point?

First Year Liberated Book

Someone is gathering a book of testimonials from people who have been liberated.  This is my posting:

Hi, All. I was diagnosed SPMS in 2004. By mid and late 2009 my symptoms were such that my life was filled with many "Probably the last time"s: Probably the last time I'll be able to go sailing, probably the last year I'll be teaching, probably my last time my wife and I will be able to travel together overseas. In fact, it was while we were away on what we figured would be a last trip overseas that the CTV story broke. On our return, we had many phone and e-mail messages saying "You've GOT to watch this!". At first skeptical (I was not one to follow forums about the latest fad diets or "cures" for MS), upon doing some research, I soon realized that there was a decent scientific underpinning to what Zamboni was proposing. In December 2009 I got my name on a list (actually, at that time, the ONLY list in the world) for testing and liberation in Poland. In the meantime, while waiting for my April appointment with Dr. Simka, I continued to research the theory and the results of the first of the "liberati". In the end I didn't bother verifying that I actually had CCSVI before I went to Poland because there was nobody in Canada that I could trust to do the testing properly.

On April 29th, 2010 I was diagnosed with CCSVI and on the same day I had the procedure done. I didn't notice anything different for a couple of weeks (though my wife and friends said that my eyes and face "looked brighter, more alive"). After several weeks I noticed improvements in my energy levels, strength, balance and mobility. These improvements mostly plateaued after 2 months, though there continued to be continuing, slow, tiny improvements since then. For example, I recently noticed that my bladder function was better even after going off my pills for that, and also am having continuing tiny improvements in mobility and balance. My progress results can be seen as numbers on www.ccsvi-tracking.com (I'm the only Canadian at 11+ months on that site) and in words amongst my postings on my blog (www.my-darn-ms.blogspot.com).

However, perhaps my biggest change is that I don't talk about "last time"s any more. If I retire from teaching, it will be because I want to, not because I have to. I look forward to traveling overseas again, sailing again... I can look forward, with reasonable hope, to a decent quality of life rather than to a life of rapidly diminishing expectations and the likelihood of being a burden on my family and on society.

There are other interesting stories being gathered on that Facebook site: Facebook group site.

Still some small improvements

Just when I think that I've had all the improvements I'm going to get, I notice that my balance has been getting (bit by bit) still better over the last couple of months... go figure!

Subsequent BNAC Trial Results Published: All MSers had CCSVI

Interesting, especially since this is the same group of researchers that only found 55% (or 62%) the first time: http://www.thisisms.com/ftopict-16149.html.  However, it should be noted that the MS patients were chosen because of a prior diagnosis of CCSVI (so these were more of a confirmation of the diagnosis) and this was only a small group of people in a study focused on other things, such as the fact that normal MRI (MRV) imaging doesn't do a good job of finding stenoses.  They also seem to be finding that proper diagnosis takes quite a bit of finesse and experience.

CBC Poll - Make your voice heard!

It`s hard to say if this will change anything, but if you do nothing, it`s more certain that nothing will change.  So, vote in this poll: CBC Poll, and then VOTE on May 2nd!

New Hope for MS web-conference now online

If you didn't get a chance to listen to Tuesday's web-conference organized by Tim Donovan (New Hope for Multiple Sclerosis Cross-Canada Tour) that featured Dr. Sandy McDonald, Dr. Bill Code, Dr. Kirsty Duncan and others, the 60 minute audio file is now available on the New Hope for MS website: http://www.newhopeforms.ca/3/miscellaneous8.htm.

Manitoba Joins Saskatchewan in Funding CCSVI Trials

Makes me proud to be a native Manitoban: Manitoba press release.

Should Canadian MSers vote liberal?

It seems the consensus that, yes, the Liberal party would support (and fund) CCSVI clinical trials and research into the impacts of CCSVI treatment on MS symptoms as can be seen in these links:

• http://www.thisisms.com/ftopict-15973.html
• http://www.facebook.com/note.php?note_id=10150100050734919
• http://www.theglobeandmail.com/news/politics/ottawa-notebook/your-question-for-ignatieff-yes-liberals-would-fund-ms-treatment/article1841344/

I don't believe in voting based on one issue, but I see the Conservative government's approach to the CCSVI as consistent with its way of governing in general: obstinate, wrong-headed, unsympathetic and manipulative.

How doctors think (or don’t think) about CCSVI

This is a few months old, but I don't think I've seen it before, so perhaps some others haven't either: CTV article by Dr. Brandes.

"Government must approve liberation therapy" says MSer

Another story about a remarkable recovery after liberation: http://stcroixcourier.ca/fullnews.php?view=518.