A unifying theory: MS, CCSVI, Vitamin D and EBV

An interesting journal article that aims at pulling together various research studies that die MS to CCSVI an other causes: http://www.sciencedirect.com/science/article/pii/S1568997212000845.  Thank you Dr. Arata for pointing this out.

Zivadinov testifying to the Canadian Senate

Here is an interesting (though long) presentation to the Canadian Senate by Zivadinov and the subsequent Q&A session: Zivadinov at Canadian Senate.  While I don't agree with him that people should only have CCSVI treatment as part of randomized trials (for people who are going downhill fast, you would be taking away one of the few hopes they have of returning some quality of life), and I still don't see good evidence for his arguments that MS may cause CCSVI, I think it is worthwhile to watch the entire video for the sake of getting a feel for current expert understanding of CCSVI.

Wheelchair Kamikaze

Here's another good (though tough to read) essay from Wheelchair Kamikaze on the darker side of dealing with the ugly disease that is MS: WK's essay.

Sure glad I didn't wait!

Just over three years ago I heard about CCSVI and its treatment.  After a couple weeks of fevered research, I decided that Zamboni's theory made a lot of sense, and that given the rapid deterioration in my MS symptoms, I should take the earliest possible opportunity to be tested and, if appropriate, treated for CCSVI.

I'm SO glad I didn't wait for the testing and treatment to be made available in Canada because, if I had, I'd STILL BE WAITING FOR THE RESEARCH TO BEGIN!  Geez, what a travesty!

Virus or Stenosis?

I'm off Baclofen again... it didn't seem to reduce my spasticity and I was starting to feel tired again.  Since that is a possible side effect of the drug, I thought that was the cause of my increased dizziness and fatigue.  However, I've been off Baclofen for almost two weeks now, and I've had some days of greatly reduced energy, seemingly tied to a pressure I feel in my head, behind my right eye.  Could it be increased stenosis of my right jugular, or some kind of low-grade virus that just won't let go?  Just when I figured it couldn't be a virus that could last so long without turning into anything more, tonight I'm starting to feel something in my chest.  Whoopee, I think I'm getting a cold!

Back on Baclofen

I'm back to trying Baclofen, starting with a very low dose for a couple of weeks to let my body get used to it.  I'm not feeling the dizziness I felt the first time I tried it, but I may also be getting less restful sleep... I'll keep you informed as time goes on.

New York Times Article: CCSVI Controversy

Here's a fairly long NY Times article on CCSVI: A Controversial ‘Cure’ for M.S.  Since there really isn't anyone calling it a "cure" for MS, I wonder why they used that title?

Fampyra didn't work for me

Unfortunately, I am in the 66% of MSers who get no (obvious) mobility benefit from Fampyra... *sigh*... Oh well, maybe something else will come long.

Dr. Dake Pays the Price

It looks like Dr. Dake (and Stanford) are being sued by two patients who had the "liberation" treatment: WSJ article.  It's interesting that this is in "Market Watch" section of the WSJ.  If the allegations are true, then it would seem that Dr. Dake placed multiple stents in a patient who explicitly stated he didn't want any.  Thanks to Ken Torbert, again, for leading me to this story.

Expert and Patient Opinions about CCSVI

Thanks to Ken Torbert of CCSVI Locator for passing on this link to the current opinions of various experts and MS patients gathered by CCSVI Australia: CCSVI Australia web page.

System model of MS

Here is an intriguing model of MS causation and progression developed by using a systems approach to analyzing over 700 papers on the subject: research article. Interesting that it was undertaken by a multi-disciplinary team of medical and engineering (physics, systems chemical) researchers. My friend Dave had once said that this complex thing called MS needs to be looked at in a cross-disciplinary way... and research like this may well prove him right. Certainly the authours of this article feel that this kind of approach is necessary. For those who don't want to read the whole article, the following suggestions come from their study of the MS systems model (unfortunately, their paper could have done with some editing and proof-reading):

Since there is a strong element of food allergy at the root of multiple sclerosis, that does not imply that (?) We suggest here several main lines of treatment in the strategy:

1. Stop triggers and provocative toxins: a. Remove all gluten, dairy products and legumes from the diet. b. Until proper blood flow has been restored; i. Avoid going to high elevations, exhaustion that may bring down blood oxygen concentrations ii. Avoid exercises that may increase the risk of overheating the brain. iii. Avoid warm climates and any environments with temperatures above 27oC. c. Stop provoking infections: Terminate any ongoing triggering infections in the upper respiratory tract or sinuses by boosting the immune system with food containing vitamins and minerals that support the immune system and/or take relevant vitamins – and/or administer relevant antibiotic drugs.

2. Cut feedback loops: a. Get treatment for any constricted blood vessels, invasive or other method, in order to restore proper blood-flow for draining the brain and spinal cord of returning blood. This implies invasive treatment to eliminate chronic cerebro-spinal vascular insufficiency (CCSVI). b. Elimination of free radicals through vitamin and antioxidant therapy in order to prevent weakening of vessel walls, and disruption of antibody programming. Strengthening the myelin sheath repair mechanisms with essential nutrients like omega 3 for healing c. Immuno-regulating medication to break off the vicious autoimmune circle acting on oligodendrocytes and myelin sheaths, for example with interferon-! type short term intensive treatment.

3. Rebuild damaged structures: a. Strengthening of regenerative mechanisms (oligodendrocytes), through the necessary resources demanded (e.g. omega 3 and?) as well as growth factors that can be included in the diet. b. Prevent further BBB opening substances by filling the BBB membranes with flavonoids that prevent adsorption of foreign substances. The flavonoids from blueberries, blackberries and blackcurrants are most effective.

4. Remove risk factors a. Avoid all high histamine diets (Certain types of wine, fermented foods, old fish etc) b. Avoid heavy metal exposure of any kind c. Eliminate any unnecessary microwave radiation as it is suspected to be able to compromise the blood-brain barrier and smaller venous blood vessels.

CCSVI clinical trials: So why is everyone so pissed off?

Another good story from Ann Kingston... and check out the comments, as well: Maclean's article.

Evidence for Vascular Causes of MS?

The research described in this abstract seems to provide evidence for vascular problems as being one of the causes of MS.

First week on Fampyra

I've been on Fampyra (which, hopefully, will help my walking) for one week now. In about a week I should find out if I am one of the 1/3 of MSers who are helped by Fampyra. In my first week I had one day of side effects (flu-like symptoms without the upper-respiratory symptoms, muscles hurting, upset stomach), but since then appear to be OK. It's a little hard to say because I have been suffering from a mild flu or cold for a couple of days, which I assume is the real thing, not side effects. Now I wait for another week to see if I am one of the lucky 33%.

The view from here...

I've just taken my first dose of fampyra, a drug that may help my walking. The first few days may be a bit tough (dizziness, etc), but was advised that if the side effects aren't too severe (things like difficulty breathing and seizures), then I should tough it through for a couple of weeks until the benefits show up... if they do. So I decided not to do my swimming tonight, since a pool isn't a great place to have seizures or breathing difficulties. Other things about fampyra: it MUST be taken on a completely empty stomach and it MUST be taken exactly every twelve hours (so as to reduce the risk of those seizures). The "exactly every 12 hours" things sounds simple enough until you actually start trying to figure out the best time to do this for every day of the week. I did try another drug recommended by my neurologist, Baclofen, for my spasticity, but one half of a tiny little pill caused me to be dizzy the whole next day so I stopped that. I hope it wasn't just a flukey 24 hour bug that hit at the same time because my spasticity is certainly getting worse and it would be nice to have something to help with that. So now I wait for the side effects...

Other things the Neuro suggested

I had a long session with my neurologist on Monday. Besides the usual list of symptoms and status I gave her, we talked about a couple of new drugs to try (as mentioned in my previous posting) given my current symptoms. I'll also be seeing someone about improving my gait, and given the narrowing in my lower spinal chord, she is going to refer me to a neurosurgeon to get his/her opinion. Between that, my gym exercises, swimming, biking, the AXON program at UNB and (newly started) Yoga, I'm keeping myself busy. Good thing I'm retired.

I tried Baclofen - Not for me

One of the things my neuro had me try was Baclofen for my spasticity. I took one half pill the night before last (you're supposed to start real slow, and yesterday was awful... I was dizzy and cog-fogged all day, tired but keyed up, even a bit nauseous for a while. Needless to say I am no longer on Baclofen. The next thing I try is Fampyra (for mobility). I can expect some side effects with that, but most of those go away after a couple of days so its worth sticking with it for the two weeks of the trial to see if it will help. Tomorrow I go to get fitted with a leg brace. I'm still going to try the Walk-Aide some more, but it needs to be re-calibrated and, in any case, there are places where the Walk-Aide just doesn't help.

Appointment with my Neuro

I had a good long session with my neurologist yesterday, and there were several new developments, some of which are in process now. As soon as things settle down, I'll let you know all about it.

MS causes CCSVI? Unlikely!

Here is a study that answers those who have stated that any correlation between MS and CCSVI may simply be because MS causes CCSVI: JRSM Short Notes.

Misdiagnosis of MS is costing health system millions

Given how poorly MS is understood, these misdiagnoses are not that surprising: Oregon Health and Science University Study.

Cerebrospinal Fluid Flow

Here is another take on possible MS causes and/or symptom relief from Wheelchair Kamikaze: http://www.wheelchairkamikaze.com/2012/08/a-first-hand-report-importance-of.html?showComment=1345742732609#c2913537310614440735

FDA and Health Canada Corruption ‘Rampant’, Whistleblowers Agree

Makes my blood boil: http://canadianawareness.org/2012/08/fda-and-health-canada-corruption-rampant-whistleblowers-agree/

New study challenges controversial multiple sclerosis treatment

Interesting... a meta-study soon to come out will say that there are no studies that have been appropriately undertaken that can attest to the efficacy or otherwise of CCSVI treatment for MS symptoms.... yet this neurologist KNOWS that this one study (which may or may not have been appropriately done) absolutely PROVES that the treatment is useless: http://www.theglobeandmail.com/life/health-and-fitness/health/new-study-challenges-controversial-multiple-sclerosis-treatment/article4490423/. What a scientist! And here I am, 27 months into my placebo effect... I think we should wait for some real, valid research before we pass judgement.

Immune cells not the bad guys in MS?

So, what if the medicines we were taking for MS were actually suppressing the immune cells that help protect us from MS: http://www.sciencedaily.com/releases/2012/08/120816122002.htm?

Back from Vacation

Wow, it's been over three weeks since I posted anything... our vacation at the cottage was GREAT and I'm still catching up on things at home.  It's good to be alive and, despite my deteriorating mobility, generally well enough to enjoy life.

Interferons don't help MSers?

Could these apparently ineffective drugs (New York Times article) have been approved and promoted to neurologists based upon the kind of drug company chicanery that I talked about in my last post?

I started on Betaseron soon after being diagnosed, but with these kinds of reports about the ineffectiveness of interferons, it makes me wonder if the short term slowdown in the progression of my MS that I saw for a while was really just a natural oscillation in the rate of increase in my symptoms.

Big Pharma Criminality Exposed

It's no longer just a conspiracy theory: http://www.naturalnews.com/036417_Glaxo_Merck_fraud.html

Macleans: MSers Screwed by Government, MSSC

Ann Kingston has done another great job of digging up the facts on the CCSVI controversy: see article in today's Macleans.  It's not a big surprise to many of us, but it still makes me sick to know that the Harper government, its lackey bureaucracy and the MS Society administrators seem to be doing their utmost to maintain the status quo.  GRRRRRRRRRRRRRR!!!!!!!!!!

How It Feels To Be An MS Dropout

Here is a very good article by Linda J. Rousay in this week's CCSVI Locator... I think you'll enjoy it:

When MS began to drastically affect my life, I was a wife, mother and career professional with many varied interests. I was active in my church, community and home schooled my children. The first thing to go was my career. Instead of getting paid, I did volunteer work in the same field. People are more forgiving of your physical problems and cog fog if they aren't paying you. Eventually my youngest daughter decided to finish her last two years of high school in the public school system. Actually I think I was more involved with her education than I was before as I volunteered for everything at school also.

By the time my EDSS reached 8.0 there was little of the old ‘me’ left. I went from caregiver to needing daily care myself. I hated the power chair, scooter, transfer table, disabled license plates for the handicap equipped van, support bars, in-home health care and me. I didn't adapt to my situation as well as some of my "MS buddies"; likely because I'm stubborn, opinionated and was accustomed to giving not taking. Though they tried to adapt also, my family seemed to be falling apart before my eyes.

Somewhere along the line I stopped feeling sorry for myself and saved as many *spoons as I could to find ways to feel better physically hoping that emotional strength would follow. Posting online took so much time that I was numb with fatigue. My online friends (some have actually remained friends) pulled me through it all. I searched the web to find adaptive aids to help me keyboard, communicate and make things look bigger so my failing eyes could see them.

The lifestyle diet and drug changes I made would have been difficult for anyone. In my hazy cognitively impaired stupor, it was a gargantuan obstacle. Again my husband, children and MS friends came to the rescue. By the time I heard about CCSVI nothing short of a miracle was going to slow my downward spiral.

The rest is Youtube and Facebook history. There is still a question mark that obscures my sight from the future but I no longer fear the unknown because I’ve mastered it before; always with “a little help from my friends. I get by with a little help from my friends.” (John Lennon and Paul McCartney)

The transition back to normalcy has been bittersweet. I still have to pinch myself when I wake up in the morning and there is no support bar above my head. The van was sold well over a year ago and every adaptive and assistive device but my power chair gathering dust in the garage has been given away or donated.  Much of it I had to fight for from either my insurance company or a charitable organization. . Some people have said I was crazy to get rid of all of those things that took me so long to accumulate because my recovery from MS symptoms could be taken away anytime. Perhaps they are right yet I can’t live in limbo either.

I would like to say that the journey home has been bright and beautiful, and for the most part it has been very positive. As my cognitive functions improved I learned that about 15 years of my MS journey has been time compressed. Though I remember the events of the past decade and a half, there are holes in the tapestry of time that are as hazy as they were the first time around. After the news of Dr. Zamboni’s work exploded in cyber space chaos ensued. The trust I once readily gave my doctors is gone forever. I have formed new medical alliances, but the days of trust and reliance will never again be realized. New friendships have been forged yet cannot replace the ones lost by anger and mistrust. New beginnings are always difficult, sometimes painful. Though I am in communication with others who have had similar experiences, we have all chosen different ways to deal with recovery. The excitement and gratitude for a second chance has been tempered somewhat by the more negative events of the past two years. The diagnosis of MS places a person in a strange club of sorts. There is only one requirement to join this group, but the price is so high that nobody wants to belong. Some who have only residual effects of the condition no longer feel “at home” anymore. Others would like to pretend that they were never even there. One woman I know was once extremely overweight. She could tell self-effacing jokes that made all of her more portly friends tear up in laughter. When she lost enough weight to look “normal” she began to realize that these friends didn’t laugh anymore when she told her jokes. Laughter was replaced with embarrassment, anger and maybe a touch of envy. In any case, she was no longer welcome in that “club” because she did not meet the one requirement: obesity. It can be that way for PwMS/CCSVI also.

The only regret I feel comes from the inequity among us. Gender, age, location, education, money, influence, achievements or any other disparity that may exist for us should have no effect on our opportunity to be treated. Though I may not be personally responsible for the egregious treatment of PwMS/CCSVI in regard to the access to the proper medical care, guilt does ebb and flow unbidden.

It is past time for reparation and equal access. To continue to allow the suffering, indignity and declining quality of life for thousands of people with a debilitating chronic disease solely to appease those with a personal agenda is an inhumane, heinous act of cowardice.

*Anyone who has not been introduced to the “Spoon Story” by Christine Miserandino , you can find it here: http://multiplesclerosis-relief.com/2011/05/02/ms-center-and-the-sp...

Back in the pool!

After many years away from swimming, my two sessions in the pool this last couple of weeks have convinced me that there is much to be gained from doing pool-based physio, so I'm a member of the Y again.  I intend that, once the summer is over, I'll be going about 3 times a week.  Add that to my 5-7 times a week at our gym, biking a half hour each day that the weather allows and the start-up of the AXON program, I'll be a busy boy this fall.  Good thing I'm retired now!

Axon program and other things

I have spending a lot of my time on various types of physiotherapy.  I work out in the gym about an hour a day.  I bike about a half hour - it's about the only way I can get a good aerobic exercise so I'm glad my balance has mostly stayed improved since my Polish "liberation" treatment, allowing me to bike about 8 Kms per day. This summer I have been trying a couple of other things, as well: the AXON program and some special swimming lessons.

Thursday will be our last session of the pilot AXON program until the fall.  I think that it has been useful in helping isolate and work on improving muscles and groups of muscles that are giving us problems.  We'll also be getting exercises to work on by ourselves until the program starts again in the fall.  The folks at the UNB Rec department intend to work on improving the program itself so that people who join in the fall will get the benefit of our participation in the pilot. Tomorrow I will have my second session in the pool at the YMCA, working with an instructor who knows my problems and has adapted some exercises that, again, work to improve specific muscles that I have difficulty dealing with in my dry land work-outs.  I was really impressed with what I got out of my first session, and expect to continue this, probably in the fall after summer vacation is over.  I also suggested to UNB that they should work with the YCMA to develop a two-part program (in the gym and in the pool) to help people with MS, strokes, etc.  They seemed interested.  Does anyone know of anywhere else that such multifaceted physiotherapy is being effectively done?  If so, let me know.

Comparing studies on CCSVI results

Two different studies on the quality of life improvement after CCSVI treatment: Facebook page. Startlingly different conclusions!

Newfoundland: No Benefit to Liberation

It sure would be good to know how the study was conducted: http://updatednews.ca/2012/06/07/no-benefit-to-controversial-ms-treatment-says-n-l-study/.  Could it be because the symptoms that are improved (fatigue, balance, autonomic functions) are hard to measure... and so there is no "measurable" impact?  What makes this suspicious about the whole story is that many of the news stories again mention a) the silly/suspect FDA announcement of last month and b) the two Canadians who have died from complications after the procedure (without mentioning the details or the fact that THOUSANDS of Canadians have been liberated).  Sounds like lazy news editors all reading from the same script... wonder who wrote the script?

Retired, but not yet dead

Last night I attended my "official" retirement party from my position at the University.  I was asked by many: "What will you do now?"  I told them that, besides working on some projects and getting caught up on the countless books I haven't read and films I haven't seen, I'll be working hard on physio, gym workouts and swimming in order to try to improve my mobility - or at least to keep it from getting worse as fast as it would otherwise.  And, of course, I'll continue to update this blog.

Speech by Senator Jane Cordy

The following is a speech about MS and CCSVI given to the senate on June 5 by Senator Jane Cordy... worth reading:

Multiple Sclerosis and Chronic Cerebrospinal Venous Insufficiency

Resuming debate on the inquiry of the Honourable Senator Cordy, calling the attention of the Senate to those Canadians living with multiple sclerosis (MS) and chronic cerebrospinal venous insufficiency (CCSVI), who lack access to the "liberation" procedure.

Hon. Jane Cordy: Honourable senators, I am pleased to speak on my inquiry and to bring to your attention the thousands of Canadians living with multiple sclerosis and chronic cerebrospinal venous insufficiency, or CCSVI. These Canadians and their families continue to plead with this government to move ahead with supporting the CCSVI treatment procedure within the Canadian health care system.

I would like to take a moment to thank Dr. Kirsty Duncan, the Liberal Member of Parliament for Etobicoke North, for the tremendous work she has done for those with MS. In addition to being a Nobel Prize winner, as part of a panel on climate change with Al Gore, she was recently awarded the Pioneer in Healthcare Policy Award by the Society for Brain Mapping and Therapeutics. She was recognized as being one of the best advocates of brain research in Canada.

Honourable senators, 75,000 Canadians live with the progressively debilitating disease multiple sclerosis; another 1,000 are diagnosed with the disease each year. Canada's prevalence rate of MS is among the highest in the world, at 240 per 100,000 people.

The suicide rate for MS patients is a staggering seven times higher than the national average. This is a shocking statistic and indicative of the hopelessness many MS sufferers feel toward finding relief from their symptoms.

Honourable senators, I believe passionately that those Canadians with CCSVI should have access to our medical system. One of the five principles of the Canada Health Act is accessibility. Yet many Canadians with MS have been treated badly by our health care system, and some have even been refused treatment.

Venous angioplasty for those with CCSVI is taking place in over 60 countries around the world. As honourable senators know, Canadians with CCSVI must travel outside Canada to have the procedure done. We are promoting medical tourism here in Canada.

I would like to thank Premier Brad Wall of Saskatchewan who announced on January 12 of this year that his government would support clinical trials for residents of his province. My understanding is that 80 patients have already been selected to go to Albany, New York, which has the largest CCSVI treatment clinical trial of its type. Many Canadians who have travelled to other countries have done so at great financial hardship. One gentleman I met remortgaged his home, others have had community fundraisers, and others have used their savings. This is Canada, where medicare was brought in so that Canadians should not suffer undue hardships as a result of an illness. Unfortunately, some Canadians with CCSVI are suffering financial hardship. Even worse, when they return to Canada, some are refused follow-up care.

Does venous angioplasty work miracles for everyone who has the procedure? From what I have read, one third of patients have tremendous improvement. They would be the so-called "miracles," the ones who go from being bedridden to walking. One third have some improvement, and one third have little to no improvement. If we had our registry in place, which was announced over a year ago, we would have better made-in-Canada data.

Health Canada should support clinical trials in Canada and provide follow-up care to ensure the safety and well-being of those Canadians who choose to have the procedure done, whether here in Canada or abroad. It is shameful how many Canadian MS patients who had the procedure done abroad are denied follow-up care by our health care system. These are Canadians who want and deserve the opportunity to get back some semblance of a regular life, to regain some quality of life.

I am concerned about the CIHR's expert working group set up to study CCSVI. I have spoken in this chamber before regarding this working group. According to the CIHR website, the working group's mandate is:

• The scientific expert working group will make recommendations on further studies including, if appropriate, a pan-Canadian interventional clinical trial that would evaluate the safety and efficacy of venous angioplasty in patients with MS, and will provide advice on the protocols to expedite such a trial (e.g. inclusion/exclusion criteria).

Honourable senators, this is a very important mandate, an important mandate for those members of the expert working group. All Canadians would assume that those on the expert group would be independent and, equally important, would be seen to be independent. We, as politicians, understand the importance of public perception. In fact, honourable senators, Dr. Sandy MacDonald, Dr. Haacke and Dr. Zamboni were not included in the August 26, 2010 joint CIHR-MS Society meeting. The explanation given was that their work would be discussed and including them might bias the discussion. In fact, Dr. Sandy MacDonald, who has performed venous angioplasty on MS patients, and who has a diagnostic imaging clinic in Barrie, Ontario, and whose office trained the imaging diagnostic team in Saskatchewan, was not included as part of the diagnostic imaging meeting held by CIHR last fall. One of the country's leading experts was not invited to be there.

Honourable senators, Dr. Barry Rubin is a member of the CIHR expert working group. He is also the third author of an article called "The 'Liberation Procedure' for Multiple Sclerosis: Sacrificing Science at the Altar of Consumer Demand" in the May 2012 Journal of the American College of Radiology, volume 9, issue 5.

Honourable senators, I am not questioning any doctor's right to their opinion on multiple sclerosis or CCSVI, and I am not questioning their right to publish medical articles on CCSVI. What I am questioning is that a supposedly unbiased, independent member of the expert panel would publish such an article.

One has to question whether this will prejudice the ethical board reviews for CCSVI trials.

This is clearly a conflict of interest and I would hope that Dr. Rubin would step down from the panel of experts. The fear among members of the CCSVI community that have been in contact with me is that the expert panel can no longer be seen as independent, and they fear that perhaps the government's announcement of phase I clinical trials is not meant to proceed but is, in fact, being set up for failure. That would truly be unfortunate. The study should be open, transparent and, above all, should be conducted without bias. This is what Canadians deserve. This is what the CCSVI community in Canada deserves.

Honourable senators, there is a great concern with the CCSVI community that while the government fast-tracked Tysabri and Gilenya for use by MS patients, the government has been reticent about clinical trials for venous angioplasty. Tysabri is known to cause PML, or progressive multifocal leukoencephalitis, which is a rare and usually fatal viral disease. This drug, which was fast-tracked by Health Canada for use by MS patients, has now infected 232 people with PML and killed 49 others worldwide. Gilenya, the other drug fast-tracked by Health Canada for MS patients, has now killed 11 people and is currently under review in Canada.

Unfortunately in Canada, when a drug is under review, we, as Canadians, receive little or no information about the whys or, indeed, about the process of the review. By the way, Gilenya is not supposed to be given to people with a vascular condition, so it should not even be taken by those with CCSVI.

So you see, honourable senators, the drugs Gilenya and Tysabri have been fast-tracked for MS patients, but the venous angioplasty clinical trials for MS patients with CCSVI continues to move at a snail's pace. In fact, we still have not begun to keep records of those who have undergone the procedure. The establishment of a registry was announced in March 2011. The registry is supposed to start in September 2012. We will have lost a year and half of evidence related to venous angioplasty. We could have been tracking and collecting data for those who have had the procedure. We would have had some data on the results one month, three months, nine months and a year after the procedure has been done. Honourable senators, we cannot get this time back.

Honourable senators, on May 10 of this year the FDA issued an alert on the potential dangers of the liberation procedure to treat CCSVI. The FDA regularly issues warnings for pharmaceuticals or medical procedures. These warnings are a positive thing. The more informed a patient is about a drug or procedure, the more informed their decision will be about what course of treatment they wish to follow. These types of warnings provide greater patient safety and transparency. In fact, our Social Affairs Committee has heard over and over again the need for openness and transparency for clinical trials in Canada. The FDA does say, "There is no clear scientific evidence that the treatment of internal jugular or Azygos venous stenosis is safe in MS patients." In fact, this is incorrect as there have been four published studies which conclude otherwise.

As Dr. Bill Code, an anesthesiologist from British Columbia, and a CCSVI patient who has had venous angioplasty, stated:

It's important to take it in perspective. If there has been one direct death, perhaps two, in say 12,000 cases, that's still much less than we're getting from some of the drugs used every day in multiple sclerosis.

Dr. Rob Zivadinov, a neurologist and lead researcher in the largest CCSVI study taking place in Buffalo, New York, concluded that CCSVI does exist, and it is not unique to MS.

Honourable senators, I had the pleasure of hosting a breakfast on CCSVI with Dr. Kirsty Duncan. One of the presenters was Dr. Joseph Hewett, an interventional radiologist and phelbologist. Dr. Hewett was born in Manitoba, but works in the United States. He jokingly said that he works in the United States, but treats a lot of Canadians.

Dr. Hewett currently diagnoses and treats patients with multiple sclerosis and other neurodegenerative disorders using MRI, ultrasound and venous angioplasty, and he has been doing so for over 15 years. The techniques being used to treat blood vessel abnormalities in MS patients are the same techniques that have been used for decades. There is a large and increasing amount of research showing an association between diseases like MS and the blood vessels. As Dr. Hewett said, with a blockage it may take decades for the problems to accumulate, but over the course of years the results of these blockages in the outflow compound themselves. We know that blood vessels play a major role in neurological disease.

Honourable senators, even if you doubt that venous angioplasty for those with CCSVI works, should you not at least get as much information as you can?

As Dr. Hewett said:

• The overwhelming number of patients with MS who have had an improvement in their health as a result of changing the plumbing from their brain should be proof enough that we need to look at this closer — that we need to figure out what is valid and what is not regarding our understanding of the subject. We owe this to the hundreds of thousands of Canadians who are afflicted by neurodegenerative diseases and to the millions of Canadians who care for them.

Honourable senators, I am certain that most of us know someone with MS. Should they have travel to Mexico. Poland or the United States for venous angioplasty? This is a procedure that has been done for decades in Canada. It is performed for Budd-Chiari Syndrome and May-Thurner Syndrome across Canada.

The practice of medicine is continuously changing and evolving. As patients, we must always weigh the benefit-risk ratio of a medical procedure or a medication. Do I take the medication with its risks, or do I not? Do I have the medical procedure with its risks, or do I not?

Honourable senators, I will leave you with these thoughts from Christopher from Nova Scotia:

• As an MS patient I have always been willing to take the risks of increased liver damage, possibility of developing leukemia, increased risk of cardio toxicity . . . and these are with the drugs. I took the "risk" of venous angioplasty. And I won that gamble . . . more than I can say about the risks of the drugs where I came out short-changed.

Speak out!

I know that this isn't a "MS" issue, per se, but protecting the environment and democracy should be at least as important to us as to the average Canadian:

Are you worried about the environmental and democratic process implications of Bill C-38? The bill would allow the federal government to greatly reduce its ability to provide environmental oversight, while at the same time stifling advocacy by environmental NGOs. Today, hundreds of organizations (such as http://www.pembina.org/blackoutspeakout.html) and individuals have joined the campaign to speak out against the government's regressive moves by putting this message on their web sites: http://www.blackoutspeakout.ca/. 

Valve job?

Maybe, in the near future, they'll replace valves instead of stenting them open: Facebook page concerning a replacement valve patent.

AXON Training Results

I've finished the third week of the AXON training course and I'm pretty sure that this is going to be good for me.  Despite doing apparently "easy" (to a normal person) exercises, the workouts that isolate the specific muscles and muscle groups that have begun to atrophy (on my left side) means that I do feel quite tired at the end of the one-hour session... and that gives me hope that I'll be able to see some improvements in their functioning by the end of the course.  It will also give me exercises to incorporate into my regular workouts for when the course is over.

New Health Canada Warning About Tysabri

Here is an interesting e-mail I received the other day:

Hello Ted,

As someone who blogs about MS, I thought you may be interested in sharing the following information with your audience.

Health Canada has approved a change to the TYSABRI Product Monograph to assist physicians and patients with multiple sclerosis (MS) make better-informed decisions about treatment with TYSABRI - for patients with relapsing-remitting form of MS. 

The new label identifies anti-JC virus (JCV) antibody status as a risk for developing an uncommon, but serious, brain infection known as progressive multifocal leukoencephalopathy (PML). 

The new label states that:

·         Anti-JCV antibody negative status indicates that exposure to the JC virus has not been detected;

·         Patients who are anti-JCV antibody positive have a higher risk of developing PML;

·         Patients who are anti-JCV antibody positive, have received prior immunosuppressant (IS) therapy and have received treatment with TYSABRI for more than two years have the highest risk of developing PML.

For more information, please view the news release at:
http://www.newswire.ca/en/story/979137/health-canada-approves-updates-to-tysabri-natalizumab-product-monograph-to-include-anti-jc-virus-antibody-status

Kind regards,
Rick Maddalena
416-486-7225

GCI GROUP : changeRULES

Do any of my readers have experience with Tysabri that they can share?

MS Society-funded Study: No CCSVI in MSers!

Contradicting most other studies worldwide, a MS Society-funded study found LESS CCSVI in MSers than in the general public: see CCSVI Facebook page.  This makes it easier to believe the paranoia concerning the real goals of the US and Canadian MS Societies in funding research into CCSVI.

When CCSVI Treatment Doesn't Help

Some encouraging words from Marie: Facebook Page.

Diet for Healthier Mitochondria?

Has anyone else with MS tried the "hunter-gatherer" diet to alleviate MS symptoms and (perhaps) heal myelin?  If so, please let me know about it.  In any case, you might want to see this TED talk by Dr. Terry Wahls concerning her experience with it as an MSer and a reseracher: http://www.youtube.com/watch?v=KLjgBLwH3Wc&feature=player_embedded.

AXON Course

For MSers in the Fredericton area: there's still room in the AXON course I discuss below, and they'll still take you up until this Thursday if you want to join in.

Medical Marijuana for MS

A CBC story about MSers using marijuana to alleviate spasticity and pain:

http://www.cbc.ca/news/health/story/2012/05/14/marijuana-multiple-sclerosis-spasticity.html

FDA Ruling Smells Fishy

All folks following the CCSVI story will have heard the news about the FDA ruling concerning the "danger" and "lack of evidence for the utility" of the treatment. Sounds like an argument that Big Pharma and some scared neurologist/researchers were using two years ago: you'd think that they'd making it sound like it wasn't written by the same scriptwriters.  After all, tens of thousands have been treated with no more complications than could be expected from normal angioplasty and venoplasty, which is done every day to treat other conditions.  The "lack of evidence of efficacy" is because the big studies haven't come in yet.  It would be interesting if a good journalist would follow up on this to find out how this strange ruling came about.  Maybe then we'd find out more about the mechanisms and FDA officials that allow dangerous drugs on the market simply because they have the backing of big drug companies.

MS Awareness Month

A speech by Liberal senator Jane Cordy made on Wednesday, May 9th in the Senate Chamber regarding Multiple Sclerosis Awareness Month:

 Hon. Jane Cordy: Honourable senators, May is Multiple Sclerosis Awareness Month. As you all know, multiple sclerosis is the most common neurological disease affecting young adults in Canada. Most people with MS are diagnosed between the ages of 15 and 40 years of age, and the unpredictable effects of MS last for the rest of their lives.

There is groundbreaking research being undertaken in more than 50 countries around the world in the area of CCSVI for MS patients. Indeed, venous angioplasty is being done in over 50 countries in the world. Unfortunately, Canada is not one of them. These studies have shown measurable results in relieving symptoms for those suffering from MS through the improvement of blood flow to and from the brain. Enough evidence exists that we need to look at this treatment more closely and to figure out what is valid and what is not regarding our understanding of CCSVI and MS. Canada owes this to the thousands of Canadians and their families who are afflicted with this disease. Canada should be contributing to this research with our own Phase II clinical trials.

Honourable senators, we need the science. We need the "made in Canada" evidence.  It has been almost a year since the federal government announced it would begin the long process to allow clinical trials here in Canada, but their efforts have fallen far short of what is required and progress is at a standstill.

The MS registry was announced in March 2011 by Health Minister Aglukkaq, and yet information will not be collected until September 2012. We will have lost 18 months of data.

Just as member of Parliament Kirsty Duncan has been doing in the House of Commons, I have been working to raise consciousness about MS in the Senate with my Senate private member's bill, Bill S-204, which seeks to establish a national strategy for CCSVI, and with my inquiry on MS and CCSVI.

As this is Multiple Sclerosis Awareness Month, I urge honourable senators to examine closely the issue of MS and CCSVI so that one day in the near future, Canadian MS patients can benefit from "made in Canada" research and treatment. Honourable senators, talk to those who have MS and listen to their concerns. Canadian MS patients should not be forced to travel to the United States, Europe, Mexico or Poland to be cared for and treated for MS. Canadians expect, and rightfully so, to be treated and cared for in Canada by Canadian doctors. Our government should not be promoting medical tourism.

Short-Term Outcomes of CCSVI Treatment

Here are some results from Albany: Neurology Review.

My MRI Results

I've finally received initial results from my MRI from my family doctor.  Several problems in my spine and spinal cord including areas of demyelinization and stenosis, but most if not all of those were not new and hadn't changed much since 2008.  There has been some additional growth of bony abnormalities on some vertebrae, including to the point where (as I understood it) at least a couple may almost be fusing, but that didn't seem to worry him too much.

What was both new (in terms of extent) and worrisome was the almost complete degeneration of the L2-L3 spinal disc.  That's probably the reason for my sore, stiff lower back... and leg spasms when I get out of bed or out of chairs.  When I asked him if that could be the cause of my recent decreasing mobility, he said he didn't know.  He did say that surgery for such problems is very rare, and they would have to be very sure that it truly was the cause of my mobility problems before they would do anything.  In other words, I'm probably going to have to live with it, with pain-killers and appropriate physio the best that modern medicine can do for me.

I hope that my neuro has something a little more encouraging for me when I see her after she gets back from her sick leave.

First bike ride of 2012

I finally got out on the bike today - a gorgeous day.  It was a bit windy and there were lots of "Sunday walkers" - and dog walkers who weren't watching where they or their kids or dogs were going - but I made it, even though I had to do some sudden braking for them.  I guess my balance can't be that much worse than it was when I put away the bike last fall.

Paul, the Fampyra looks interesting (http://www.biogenidec.com/therapies_fampyra.aspx?ID=9793)... if you get on it, let me know how it works for you.

CCSVI: Three Years On

Here's a good blog posting by Wheelchair Kamikaze, summarizing where we are three years after CCSVI became know to few interested researchers and a nucleus of patients and caregivers who felt that the issue needed to be pursued: http://www.wheelchairkamikaze.com/2012/02/ccsvi-three-years-on-some-thoughts-and.html

Impact so far?

It's well over a month now since I had my veins re-opened at the Synergy Clinic in California and, so far, I haven't really seen any impact of the procedure.  In the last six months or so I'd seen some slippage in my energy and balance symptoms and was hoping to get back all of the gains I saw after my trip to Poland (almost two years ago), but that doesn't appear to be happening.  In the meantime my mobility continues to deteriorate, though perhaps that is due to the arthritis that seems to be getting significantly worse these days.  Since I am on Pradax for three months (as a post-treatment "blood thinner"), I'm not allowed to take my arthritis medicine until that is over.  I'm still waiting to get to see a doc about my MRIs: could the osteoarthritis in my lower back be causing some of my walking problems?  It sure feels like it could be, but my neuro is on sick leave so it may take a while to find out for sure.

New Course for Mobility Problems

Here`s some info about a course for MS folks around the Fredericton area that might help improve mobility:

Hello all, here is the course outline for a program that UNB (at the Currie Center) has developed in conjunction with the Stan Cassidy Center to assist in retraining the brain and hopefully recover some lost mobility functions.  If you are interested you can register by calling UNB URec at the numbers shown on the course description.  If you know of others that could benefit from such a program (such as stroke, MS, other neurological conditions) please forward this information to them.  Best regards and wishing you good health, Dianne Harriman.

A.X.O.N. – Advanced Exercise for Our Nerves
Spring 2012 Pilot Program
The AXON pilot program is a twice per week progressive program designed for those who are experiencing physical complications due to a neurological condition. Each day will include exercises that will help to build and/or maintain upper and lower body strength as well as balance. All exercises are led by Canadian Society of Exercise Physiology certified staff. Pre and post-testing is completed and is used as an objective measurement for improvement.
The AXON pilot program is adapted to meet the needs of each participant in a non-intimidating and encouraging environment. In order to be accepted into AXON, participants must be able to walk (with or without a walking aid), have the ability to verbally communicate, and have appropriate endurance to exercise at a light to moderate level for one hour. Participants will be asked to have their doctor fill out an AXON-specific PARmed-X prior to beginning the program.
Lead Instructors:
Dave Thomson, CEP
Alina Cress, CPT
Day/Time: Tuesdays & Thursdays, 2:00pm – 3:00pm
Next Session: May 15 – June 21, 2012
Cost: $70.00 members, $85.00 non-members