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Friday, June 7, 2013 1:00 AM | Denise Baillie Volg link

Well, in June of 2009 when my allergy of a particular flowering tree set off my annual bad MS attack and I could no longer work and I went on short-term disability and then long-term.  I had another bad attack in 2010 and haven't had one since, just getting worse and worse, so again, I knew I was secondary progressive before I was told I was...but I digress.


As we all know, in late 2009 a story aired on W5 about a Dr. Paolo Zamboni and his new treatment for MS that involved a new vascular condition he found in people with MS that he called Chronic CerebroSpinal Venous Insufficiency.  I was interested and started looking into it.  Like you probably did,  I found out that the vascular theory of MS actually predates the autoimmune theory by many years and the autoimmune theory was based on findings in MICE who had a condition that is similar to MS (but most definitely was NOT MS).  They even used to 'induce' MS in mice by tying off their jugular veins in the 1930's to do MS research.  I saw my neurologist just a few months after that first story aired and told him I wanted to be a part of his study into CCSVI treatment, which I was sure he would be doing since he works at my local MS clinic.  He kind of rolled his eyes at me and explained there is nothing to that theory and it is too dangerous.  Well, I kept researching and finding more and more exciting findings and evidence that seemed to me to support CCSVI treatment as being effective; not least of which was the amazing before and after videos that are all over the internet.  I know there were several studies that neurologists held up as disproving the efficacy of CCSVI treatment, but when I looked at them I thought they did - patients reported improved quality of life still after 6 months (far too long for it to be a placebo effect).  The reason the neurologists said it didn't work was because it wasn't fixing the neurological damage that had been done, which is something I don't think any rational person would ever expect it to do.  Over the next couple of years I kept mentioning it to my neurologist and he kept telling me to forget it and all the while my symptoms just kept getting worse.  I joined my local CCSVI advocacy group and we lobbied the MS Society and the provincial government to get this treatment done in Canada.  I did a few interviews on the news, which they without fail butchered to only show the emotional fluff and to say what they wanted it to say (much like CCSVI Clinic seems to have done with Lee's experience, which he personally described as a 'nightmare').  I worked to help raise funds to bring in some speakers for CCSVI information sessions that our group put on and I worked to help others raise funds to go for treatment through a couple of silent auction fundraisers.


 All the while my health was in a downward spiral that seemed to be accelerating every day.  Finally 2 of my wonderful MS/CCSVI friends organized a silent auction fundraiser to raise funds for me to finally go get treated.  With that and some other fundraising events (my sister in NB raised money for me too), I had about $5000.  I fortunately had a small RRSP that I cashed in to get the rest of the money I needed to get treated.  I have heard good things about a couple of places that were doing CCSVI treatment in Mexico, but my cognitive fog was just too bad to risk dealing with a language barrier; I had heard of 2 excellent places to go in the US - in Albany, New York, and in Newport Beach, California.  I liked what Dr. Arata was saying about dysautonomia because 95% if not 99% of my symptoms were autonomic; so I settled on going to Synergy in Newport Beach, California to get treated May 1, 2013.  I'll tell you all about it next time!