CCSVI Tracking - 12 month chart

This is what my symptom report (for some of my most important symptoms) looks like for the 12 months since my liberation:

‘Liberation’ row shows that scientists need more social media literacy

An interesting story that suggests that scientists need to get better at using social media to educate the public about science and educate themselves about trends: Vancouver Sun article.

Melissa's story - almost 10 months

My friend Melissa was spurred to write to me when she realized from my blog that I was approaching one year since being treated.  I asked her for an update that I could share with you and here it is:

Time does fly!!!  This time last year I was anxiously waiting to hear Ted's results with CCSVI.  I had already made up my mind that I was going to try CCSVI to see if it would help the disease which haunted me daily.   It  has been nine months (soon to be ten) since I had my CCSVI treatment.  I have had some significant gains in my balance, fatigue, and endurance.  When the Physiotherapist tested my muscle strength before my Poland procedure  my "bad"  leg tested at 3-/5, now it is at 5/5.  This may vary on weaker days. Now I have a limp and not a leg drag  and only use my cane if I'm very fatigued.   Before the procedure the cane was part of my daily outfit.  I can count on one hand the times I have used my cane since last July!!! I will  share some of my proudest victories with you.  For the first time in eight years I was able to go biking with my daughter, who is eight:  she giggled and gave me pointers, while tears rolled down my eyes uncontrollably.  I have played hop scotch, skipped, and tried ice skating (shuffling).   I'm not saying all these were done with elegance and grace, but they were accomplished!!!  I can stand and  watch her play hockey if there is no seating.  I have seen the  puck go in the net and not have to ask if it was a goal.  I can find her number and know it is her on the ice, where before I needed other parents to point her out.  I have just returned from vacation where I  walked around a cruise ship without my cane.   I was able to walk to dinner every night with heels!!!!   On previous vacations the end of the day left me being pushed to dinner  "with no heels".   I walked through the Halifax Air Port pushing my wheelchair, not "being pushed", which left a confused security officer, who asked, "who needed the  chair? my husband or me !!".   Liberation has not fixed everything but has improved my daily living a good 80  percent.  I still run out of gas before the other mom's but go further before the tank is emptied.   Liberation has brought a smile back to my face and gave me  more quality time with  my Daughter and  Husband. Some may  think this is insignificant but I believe that, "I found the Pot of Gold at the end of the Rainbow!!!!" Melissa Robertson Liberated July 16, 2010

Another procedure, again improvements

John is working with us on the www.newhopeforms.ca tour: John McLaughlin story.

Almost one year

My "liberation anniversary" is only a few days away and it's Easter, so it's a good time to reflect on this past year. After a slow start compared to many others who've been liberated, I've seen the following changes:

Fatigue: this has been my biggest change. About a week after returning from Poland I noticed that I wasn't as fatigued, that special MS fatigue I expect you know well. Sometimes over the next few weeks or so I would say that my MS fatigue was 80% reduced. For me this was the biggest improvement in terms of change to my quality of life.

Mobility: Within a month of the procedure, I stopped using my cane except for longer walks, to provoke sympathy at airports, or when i was reminded by my physiotherapist that I should use it to help me learn how to walk right again. My EDSS has gone from 5.5 to 4.5, but I still have a bad limp and can't go more than a few hundred meters without a rest. I have days when my walking is worse, but sometimes that's caused by too much red wine.

Balance: My balance got better a few weeks after Poland and has stayed much better all along (again, except when I've had too much wine).

Strength: My left side has been weak since early in my MS, but I did see a noticeable improvement a few weeks after the procedure when I did my regular workout. While this varies considerably day-to-day, I would say that it has only improved a little more (if at all) in the months since then.

Bladder function: I was already on Flowmax when I had the procedure and I just stayed on it, it was hard to tell if any improvements were due to the procedure or the medicine. However, I stopped Flowmax a month ago and most of my improvements remain.

And finally, starting a couple of months ago, I began noticing that my left foot wasn't feeling frozen all the time... I finally have warm feet again!

My friend Louis - the good and the bad

I received an e-mail this morning from my friend Louis. He's just returned from having his veins checked at the Eastern Maine Medical Center in Bangor. The good news is that his blood flow appears to be just fine, according to them. The bad news, he informs me, is that by now he has lost pretty well all the improvements he got after his procedure last summer, and he can't blame resteonsis for that.

There is still so much we don't know about MS, and about the liberation treatment and its impacts. Why should some get tremendous, apparently lasting improvements while others get none or get some and lose those gains even without re-stenosis? Why would I keep my improvements after a year (in fact, despite daily ups and downs, getting more improvements), while Louis loses his in a shorter time-span?

My improvements were pretty slow coming compared to many of those telling their stories of big, dramatic improvements on the Internet but, so far, the symptom relief I've won has stayed. Since I would have considered myself lucky if liberation had simply halted or slowed the progression of MS, I feel I've won the big prize... maybe not the lotto jackpot, but a great win, nonetheless.

Are patients "distorting" the scientific process?

A thought-provoking article: Facebook article by Marie

Opposing ideas

An interesting summary of a new debate about the significance of older findings: Macleans article.

CCSVI treatment gets underway in Texas

Note: "CCSVI itself, regardless of MS presence, is known to cause mind impairment", from Baylor College of Medicine information.

How can MS cause CCSVI?

From the CCSVI in Multiple Sclerosis Facebook page: CCSVI in MS notes.

Wheelchair Kamikaze rant

Every once in a while I check out Wheelchair Kamikaze's blog about his life dealing with MS and about his take on the "MS industry" in general. Interesting reading: Wheelchair Kamikaze rant.

Concerned about the Buffalo Study?

You shouldn't be... besides being old news about a study that wasn't completely done right, some of the hypotheses that the authours say are suggested by the study (such as maybe MS causing CCSVI) just don't make much sense, as Dr. Sandy McDonald says in this letter: Dr. McDonald's letter on Facebook.

MS without drugs

Here's a note from a friend in Ottawa who has MS:

I just saw a neurologist for the first time in a few years now. I chose to consult with one not affiliated with Mark Freedman and the MS Clinic of Ottawa because all they ever wanted to do was push drugs on me. It is very interesting what this new neurologist had to say about my first MRI that I had taken during my first attack a few years back. The doctor at the MS Clinic in Ottawa that diagnosed me told me that I had a very heavy lesion load for a first attack and warned me that I would be in a wheelchair within 6 months time if I didn’t start taking Avonex immediately based on the severity of this MRI. I refused to take Avonex after I researched it and this made the neurologists VERY unhappy with me. I returned a year later to show them that I was doing well and had no need for a wheelchair but they did not congratulate me or show any kind of happiness toward my state of stable health. The neurologist I consulted with this week read that same MRI from a few years ago and told me that my lesions were extremely tiny and not significant enough to warrant putting me on an immunotherapy drug! She also told me that given how well I’ve done since my diagnosis without any drugs that she would recommend I not take any. As you can imagine, this was a rather pleasant surprise to have a neurologist support my decision not to take any MS immunotherapy drugs!

Lew liberated two years ago

He has no stenoses, his blood is flowing fine, but he has had no other improvements after his initial ones, and his knee continues to deteriorate: Lew's story.  So CCSVI could be the whole story for RRMS people, but for us progressives there has to be more to it than that, which is not surprising since we have central nervous system damage.

N.B. to help MS patients seek controversial treatment

Yay for New Brunswick: Canadian Press story.  Another province is joining the fight to make CCSVI treatment more accessible.  A slightly more detailed story is on the CBC website this morning: CBC story.

Dr. Mehta's research results

These new research results describe a much higher (90%) incidence of CCSVI in MSers than was found in the Buffalo study: ThisIsMS.com thread. I sure wish that the Buffalo study had been done more carefully... and it's not clear to me why the BNAC study supposedly puts makes it so doubtful that CCSVI causes MS but, even if that were the case, it doesn't mean that it doesn't cause many of the symptoms associated with MS.  Certainly there are a lot of case studies that seem to point to CCSVI treatment significantly helping to reduce "MS" symptoms in many patients.

2 doctors, 2 different reactions to MS study

Hmm... it's a year-old study, but it's now starting to get some heated arguments going among the doctors:CBC Story.  At least now the arguments are out in the open.

MS vein blocking doubted

Although the updated details don't seem to bear out the title of the article, still this does add ambiguity to the entire affair: http://www.cbc.ca/news/technology/story/2011/04/13/multiple-sclerosis-ccsvi-buffalo.html. I'll be interested in seeing the analyses of others into the actual research results.

One year later, MS patients track their progress

Thanks to CTV for continuing to follow this story: CTV update story.

Alberta government faces increased pressure for CCSVI trials

Keep up the pressure: CTV Edmonton story.

Reflux, revolution, and the role of forgotten research

This very readable paper helps to put the controversy surrounding CCSVI treatment in a historical context: http://www.uwomeds.com/uwomj/v79n2/weiss.pdf.

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.