Monday, November 23, 2009


I thought the W5 episode was awesome and ironically seemed to follow the same path as my blog! It will bring so much exposure that anyone with MS will hear about it and I’m sure be over the top with excitement just as I was when I first learned about CCSVI. I am sure that MS clinics and societies will be overwhelmed with phone calls today. I knew that cautious scepticism would be the MS society’s position but to discourage people from being tested is just wrong. First of all, you can’t just go and get tested, so far I don’t know of any facility in Canada other than Dr. Haacke that is ready to do the testing and I know that if any are that they have been overwhelmed with enquiries and willing volunteers. Hopefully we can keep the pressure up so that an accepted protocol like Dr. Haacke’s can begin to spread around Canada. Demand for these tests is going to be huge so this may pose a problem but we have to keep the heat on and demand that our MS clinics and research bodies take this seriously. I spoke with the Calgary MS clinic as recently as last Thursday and was met with complete scepticism and negativity regarding CCSVI although I’m sure that wasn’t an official position. My point is that everyone with MS should contact their neurologist to enquire about CCSVI so they are inundated with requests and feel forced to act. There’s no way we can let this break through take years to get past the trial stage and become available to those of us suffering. As Dr. Zamboni said, MS is a progressive disease and people can’t afford to wait around while our bodies deteriorate.

Having said that, we must also realize that this is only part of the big picture, there is so much more to learn. Reading through some of the info being posted on MS internet forums makes you understand that there are still many questions and unknowns regarding CCSVI diagnosis and treatment. We must be cautiously aware that this is not going to be the answer for everyone but it does give us a running start. I do believe that this breakthrough will spawn many new discoveries and kick start new research ideas across the world; I think this is the beginning of the end of multiple sclerosis! Now that CTV has broken this story I expect American media will jump on board and maybe things will begin to snowball. The internet fervour has already begun to heat up and where there’s a new story, there will be coverage.

CTV came by my house today for an interview with Avis Favaro to get my reaction to the news. Even though it wasn’t new to me I’m still totally excited and even more so that the story got national exposure. It was quite short but I think will air on the six o’clock national news.

BREAKING NEWS...I was just told that the MS society will be opening up funding for CCSVI research in January! Now that’s what I’m talking about, look how quickly their position turned! Once we get enough people on board and can put enough pressure on our medical and research bodies, things will really start to move.


Loobie said...

Hey Leroy,
I got word from Joan that Avis will possibly be contacting me and a few other original "stentoneers" and interviewing us. Pretty cool!

Judi Pom said...

Hi Lee--Judi from North Carolina, USA here. I just wanted to ad that contacting vascular surgeons may be useful as they are the ones who may be performing the surgery. I out of the book, emailed a vascular surgeon at Duke University asking if he performed the surgery--He emailed me back to say he did not, but he was hoping to change that. I called Stanford last week and am sure I'm on a very, very, very long waiting list.

Good luck to you. I think I will start blogging about my NC-CCSVI-MS experience.

Kara said...

Hi Lee,
your sister has been emailing me your blog for some time now. We went to High School together. I am in Germany now and I emailed the tv interview to my Doctor here. When I first told him about CCSVI last month he had never heard about it. And told me that the German MS would have emailed him about this since he has emails everyday about new cures. So he told me this is probably something that is not real. Then after my email yesterday he told me the MS society here now has a stand and still thinks it is high hopes for people with MS.
In case you want to see what Germans are saying. You do have to use google translate to read it. So next week I see him and I will find someone to do the scan for me here.
Keep blogging!!