Dr. Bill Code

I had an opportunity to see Dr. Code make a presentation yesterday in Saint John concerning CCSVI, its symptoms, its possible relationships to MS and other neurological diseases, its treatments, and his ideas concerning vascular health.  If you have a chance to see his presentation, I would advise you to do so.  Otherwise, get on the National CCSVI Society website (http://www.nationalccsvisociety.org/) to learn more and maybe order Dr. Code's book.  I am slowly absorbing and processing what I learned, but I am already changing my vitamin supplement regime based on his advice.

Wheelchair Kamikaze's posting about progressive MS

A very good summary of his literature search findings: Wheelchair Kamikaze blog.  I commented as follows:

I have been diagnosed with SPMS, though my period of RRMS was very short (if it existed at all). Almost 18 months ago I was "liberated", which brought me relief from the symptoms of fatigue, balance problems and bladder problems. My mobility seemed to improve, but that may have been primarily due to improved balance. My dexterity, footdrop and left-side weakness problems have continued and, most recently, may have gotten slightly worse. This seems to be consistent with the results from other progressives after liberation: those with energy, balance and bladder problems often see an improvement, while those who do not have those problems do not see any positive outcomes.

Interesting stories and links

Here are some recent interesting stories on Ken Torbert's CCSVI Locator blog:

• Researcher on CCSVI andSocial Media is Looking for Participants: I did this survey a few weeks ago, but you should consider taking part in this survey.
• CCSVI Study in Canada: It looks like Dr McDonald will finally be allowed to study people before and after they are treated for CCSVI.
• Large research study finds that 91.5% of MSers have CCSVI: These numbers are very close to what Zamboni originally found, and to the numbers being given by sites treating CCSVI.

I've been remiss...

I've been a bit busy lately (course preparation, reviewing a paper, etc) and somewhat distracted, but I intend on giving a symptom update sometime before my eighteenth "monthiversary" that comes up at the end of the month.  Also there seem to be some exciting things to read about in Facebook and the CCSVI Locator Blog with respect to CCSVI and MS that I'll try to review and summarize when I get the chance.

More disease relationships?

Here is an interesting message from my friend Shelley in response to my questions between possible links between CCSVI and Parkinson's:

Hi Ted,
 
I read your blog post about being in Manitoba visiting family and friends and your interest in how CCSVI research ties in with Parkinson’s and I am experiencing the same kind of interest only with Lyme disease. I’m learning that Lyme sufferers are also testing positive for CCSVI upon ultrasound and I know of a few who have gone so far as to have the very same venoplasty procedures as MS sufferers for CCSVI and have had a relief of their symptoms! Sadly, one re-stenosed a month later but he is going to have the procedure a second time. Something big is going on here. I also know of two women in Ontario, who, after watching the same Lyme documentary that I watched this summer that aired on PBS (“Under Our Skin”), have taken it upon themselves to have their blood drawn here and sent to California for Lyme disease testing. Would you believe that both of these women who were diagnosed in Ontario as having MS and had their blood tested in California have tested positive for Lyme disease?!
 
We don’t have proper Lyme disease testing here in Canada, yet we are very much a tick infested country. Could this be why so many people are diagnosed with MS when they could truly have Lyme disease? Lyme mimics MS. Lyme can produce white lesions on the brain just like MS. The blood test available here is wholly ineffective and creates a high percentage of false negatives and most doctors don’t even know enough about Lyme to even consider it as a diagnosis, let alone think to test for it. The only way to know for sure is to have your blood tested at a lab in California called Igenex, but most people don’t know this. Lyme is a very “political” issue.
 
I am asking all kinds of questions. I don’t know what this means. Is Lyme and MS the same darn disease? Is a Lyme infection the virus that sets us up for MS later in life? When I was going through my months of hell during my first attack that started in September of 2005, I ended up on a course of antibiotics for a bladder infection in December. I got better right after that and by January had returned to my old self again and had no more MS symptoms. The treatment for Lyme is antibiotics. I’m starting to wonder now if I truly have MS or if I too could have Lyme. Or, did having a Lyme infection manifest into MS? I grew up  next to the Vermont border which is a hot bed area for ticks. I was a hiker, runner and horseback rider all of my life. I had woods in my backyard! I was exposed to ticks and remember pulling one off my dog shortly before she died in 2005.
 
Have I given you more to think about?! If you are interested you can  watch “Under Our Skin” for free. You can download it here: http://www.megaupload.com/?d=N2U4M9NA. I think you’ll be surprised at what you see and hear if you watch this film.
 
Take good care.
Shelley
 

More about blood physics and its possible impacts

Here is an abstract of the hypothesis by Dr. Tucker that lays out how the physics of blood flow could lead to MS initiation, progression and/or exacerbation: http://www.medical-hypotheses.com/article/S0306-9877(11)00459-2/abstract.

A week in Manitoba

I've been enjoying an easy and fun week visiting family and friends in Manitoba... it's been great. However, one of my in-laws has Parkinson's (as does my mother), so I've gotten interested, again, in the research that appears to link CCSVI with Parkinson's.

It's now just over 17 months since I was treated, and things haven't changed much from the point of view of my symptoms, except maybe my walking is a little worse. I sure hope I can get my MRI soon, to see if my mobility problems are actually due (or at least partially due) to problems with my bones rather than MS.

A cure for MS? These claims are somewhat premature

While this is very interesting and might lead to something worthwhile sometime in the future, I would say it's WAY to early to start making claims about a cure or even treatment: Toronto Sun story.  I'll have to look around to see if someone has done an analysis of the research to see if there is at least working theory as to how the lack of these neurosteroids could cause MS pathology.  The great thing about the CCSVI hypothesis is that the explanation of how CCSVI could initiate and/or worsen MS made sense right from the get-go... so far I don't see anything like that in the description of this research.

If you're interested you can follow the discussion (by knowledgeable lay people) about the research implications here: TiMS discussion.

Saskatchewan steps up to the plate... in a big way!

This is good news for Saskatchewan MSers: CBC story... and, in the end, it's good news for all of us.

Kirsty Duncan's - CCSVI Bill - Sep 21,2011

In case you haven't seen it elsewhere, here is the Youtube video of Kirsty introducing her bill: MP Kirsty Duncan introduces bill in the House of Commons.