Living With Multiple Sclerosis

"We have established a quality of life after the first year -- in some cases six months -- that is really improved."
"They [patients] return to their lives. Many have gotten their drivers' licences back, they have gone back to jobs and school. It normalizes their lives."
"Now, it is much less likely you will see patients in the progressive stage if we can get to them early."
Dr. Mark Freedman, neurologist, professor, University of Ottawa, director, MS research, The Ottawa Hospital

Harold Atkins, a haematologist, and Mark Freedman, a neurologist, worked on the breakthrough Canadian study published in The Lancet (Trevor Lush/Ottawa Hospital)

"Initially, it sucked. It doesn't feel good when you take the drug, but it is really not going to feel good in a month. It took a couple of months for me to get over the chemo[therapy]."
"This [11 months after the procedure] is the best I have felt in a long time. It feels like I don't have MS."
"As much as I want to be an example of what is possible for people, I don't want to be the only one [undergoing treatment for aggressive MS]."
Blake Hurdis, MS sufferer, Smiths Falls, Ontario

Only a small subset fit the study’s criteria: those with an early, active, highly inflammatory, relapsing-remitting form of the disease who do not respond to drug therapies. Study participants ranged in age from 21 to 50; all had been diagnosed within the previous 10 years; all were ranked between 3 and 6 on an MS disability scale ranging between 0 and 10 (6 is someone who needs a walking aid to walk 100 metres). Atkins estimated five percent of the MS population could potentially benefit. That is a not inconsiderable number given that 2.3 million people are estimated to be living with MS worldwide, more than 100,000 of them in Canada where the MS Society has declared the condition “Canada’s disease.” And it is undeniably a breakthrough, but there’s a danger in forgetting it’s not a potential cure for 95 per cent of people living with MS. Macleans Magazine, Ann Kingston

A dual Canadian-U.S. citizen who served with the U.S. military in Iraq an Afghanistan, Blake Hurdis had become so incapacitated with multiple sclerosis he felt his life was nearing its end. But then he underwent a bone-marrow transplant at The Ottawa Hospital in 2017 and the treatment has created an astonishing new life for the 36 year-old man who is now training to run a marathon. A year earlier, a devastating MS attack had so incapacitated him he had to resort to crawling, pulling himself along with his hands, at home.

He is one of 57 MS sufferers in total who have undergone this pioneering new therapy, introduced close to twenty years ago. Dr. Freedman, who helped in designing the treatment, cautions that it is not a cure despite its remarkable results. Of the patients who had undergone the procedure since 1999, none, however, has experienced a new episode of multiple sclerosis. One patient even returned to his work in the construction industry, after his bone-marrow transplant.

This is a treatment engineered for roughly five percent of people with MS, those who present as young with the most aggressive forms of the disease. Medication to treat other patients is constantly undergoing improvement to successfully treat their MS and dramatically reduce its symptoms. The past two decades has seen a vast improvement in the treatment of MS, since the first treatment was approved in 1995. Steady progress has made the lives of MS sufferers more livable.

The bone marrow procedure uses a patient's own stem cells, rebuilding their immune system, a process that is physically arduous for most who take part in the process. Rounds of chemotherapy designed to eradicate the individual's immune system starts the process. It can take a year of a patient's life to recover to the point where they are ambulatory with ease. For Blake Hurdis it took 11 months of effort to rehabilitate his body and plan to push himself to run a marathon.

His progress in fact, amazed doctors. "I want to be an example in some way", he explained. "There is nobody who stands out there and says, 'This is what you can do'. I want to see what is truly abnormal. How far can you push  yourself? Is it 60 kilometres? Is it 100 kilometres? Is it 200 kilometres? Who knows!"

A year and a half ago Blake Hurdis, 36, couldn’t even crawl after a devastating attack of multiple sclerosis landed him in intensive care. However, following a stem cell transplant last November, he has exceeded all doctors’ expectations and even plans to run the PEI marathon on his birthday, Oct. 14.  Julie Oliver / Postmedia

Hope for an MS Cure? 

"I have often been too proud to ask for help, or I've convinced myself I don't need it. But really, that's the thing about MS [multiple sclerosis] your body doesn't ever do what you want it to do, or what you expect it to. It's why it is so frustrating."
"My life at the moment is like an egg-timer. The sand is all going through, and I want the doctors to turn it [the egg timer] around and start the sand [dribbling through] again."
"I cannot describe to you the pain [experienced during injections between the vertebrae]. I thought I was going to faint."
"The first [experimental trial] one was miraculous. Within minutes, I was getting feeling and movement back that I never had. I immediately just asked someone for a piece of paper. They thought I wanted to write a note, but I just wanted to hold it. I hadn't been able to grip anything that thin for years."
"I'm convinced the second one [trial] was the placebo, but we don't know yet. It certainly didn't have as much of an effect. But the first, yes."
"I am now convinced, convinced this is a disease that will have been cured in the next five or so years. I think this is it [breakthrough]."
"I was surprised [at the diagnosis 30 years earlier], but mainly because I had convinced myself it was a brain tumour. And so I told him that. He went, 'No, we know what to do with brain tumours. We've got absolutely no idea what to do with MS'."
Mark Lewis, lawyer, MS sufferer, Britain

Mark Lewis photographed near his Baker Street office last week Credit: Rii Schroer/Telegraph

Over the three decades since Mark Lewis received the diagnosis that has since wracked his body, the hope that revolutionary new treatments would emerge to rescue his body from the degenerative disease known to attack the neural pathways of the brain, damaging it and paralyzing parts of the nervous system, would surely emerge. That hasn't happened. And over the space of those years he has managed to lead his life just as he aspired to when he was young and had never experienced the tell-tale tingling and numbness that sent him to a doctor to determine why his wrist was behaving so peculiarly.

Since then the symptoms of his MS have continued to progress, with no treatments available to alleviate the discomfort and difficulties of movement and motion. He has found some respite in drugs available that have the effect of seeming to temporarily retard the progress of the disease. Cognitive behavioural therapy and yoga have also proved of some assistance in alleviating symptoms. But since its onset, MS has complicated his life enormously to the point where at present he is unable to walk without a cane, tie shoelaces and other like tasks requiring dexterity of handling and movement.

His right side is now partially paralyzed and there are times a wheelchair use is in order. And then, an opportunity presented itself to become part of a clinical trial  holding out hope that a cure for MS might be around the corner. He, along with a select group of MS sufferers from different points of the geographic compass travelled to Jerusalem, and he was patient 31 of the 48 that would comprise the groundbreaking trial protocol to enable the researchers involved to gather evidence of success or failure.

The trial that took place at Hadassah University Medical Center in Israel's capital Jerusalem, had stem cells taken from the patient's own bone marrow injected directly into the spinal fluid, to encourage cells to circulate around the body and to reach the brain and spinal cord. Once there, the hope was that the cells would identify the damaged areas and proceed to correct them. A British documentary titled The Search for a Miracle Cure came out of Mr. Lewis's trips to Jerusalem for the treatment.

Advances in stem cell treatments have made great strides over the past several years. Those advances have been recognized for their potential for heart failure cures, for muscle regeneration, and for functioning in blood creation which would render redundant conventional blood donations of the past. The Hadassah research into MS treatment was initiated in 2007 and the hospital prepared for a full trial after nine years of research and experimentation. The search began for strong-minded patients with a view of maximizing the opportunity of long-term success, and Mr. Lewis qualified.

Two trips were taken to Jerusalem with the first trial involving two rounds of treatment; one that injected the real treatment, the second that would substitute the treatment for a placebo in a double-blind; neither doctors nor patients were aware of which treatment contained the placebo and which the treatment. An independent controller was the only person possessed of full knowledge. Either way, undergoing each treatment was a dreadful trial. Injecting directly into the spinal fluid with a four-inch needle between the vertebrae, the procedure was excruciatingly painful.

The immediate result however, was that Mr. Lewis was enabled to move his leg up and down with no trouble, he stood with a balance that had been missing for years, and was able to use his right hand again; representing virtually instant improvements. Except that included in the trial was the intention to discern just how long that improvement might last with the treatment. And Mr. Lewis discovered that his improvement had, by six months, begun to decelerate. Time for a second round. And this time the results were not as profoundly positive.

Despite which he is convinced that the elusive cure is near at hand; convinced as well that though the protocol was the same, in the second trial he had been the recipient of a placebo, explaining the subsequent disappointing level of improvement.

The Jewish Chronicle

From "Definitive" To Cursory

"We now have sufficient evidence that pursuing the Liberation treatment ... is not really going to be a good investment of your time and money."
"To have something new to offer people would have been nice. This is not it."
"There was absolutely no difference, no smidgen of a difference [between placebo and Liberation groups in research trial]."
Dr. Tony Taraboulsee, neurologist, University of British Columbia

Dr. Anthony Traboulsee, medical director of the University of British Columbia Hospital MS Clinic, believes this research should officially close the file on 'liberation therapy.' (Martin Dee/University of British Columbia/Canadian Press) 

"Researchers cumulatively build proof or disproof over a period of time. A true scientist never, ever would say one study does that."
Sandra Birrell, spokeswoman, Canadian Neurovascular Health Society

"I have met dozens of people who have had remarkable changes following angioplasty ... from being wheelchair-bound to walking normally."
"This cannot be placebo effect."
Dr. Bernhard Juurlink, anatomy professor, University of Saskatchewan

The miracle cure for the treatment of multiple sclerosis that spread like frantic wildfire through the community of MS sufferers who met the skepticism of doubters with the defiance of those who will grasp at hope wherever it present itself, has now been given the definitive thumbs-down, in the wake of research headed by Tony Traboulsee who has advised the waiting public that the "Liberation" treatment pioneered by Italian vascular surgeon Paolo Zamboni in 2009 belongs in the annals of wishful thinking.

The study results were revealed at a Washington, D.C. conference of the Society for Interventional Radiology, a medical specialty that performs the Liberation treatment, in advance of publication in a peer-reviewed journal. Dr. Zamboni's theory and his confidence in its utility resulted from his firm belief that multiple sclerosis was an outcome from a narrowing in neck veins -- stenosis -- causing blood to flood the brain, leaving behind iron deposits. Dr. Zamboni named his discovery chronic cerebrospinal venous insufficiency; CCSVI.

And his solution to what he diagnosed was to thread a catheter into the veins to enable the inflating of a tiny balloon, much as is done when arteries leading to the heart become clogged through arteriosclerosis, stopping the free flow of blood to the heart. The procedure is called angioplasty, commonly performed for heart patients, to stretch open the arteries clogged with cholesterol, fatty deposits that stop the arteries from their vital work, and impairing the heart.

Media described ecstatic patients, free for the first time from the debilitating effects of the disease after having undergone the new procedure in special therapy clinics around the world that opened to provide the Liberation treatment in the U.S., Mexico and Bulgaria, where the results were astonishingly dramatic. Specialists in the field were less than impressed, however. They warned that the evidence presented by Dr. Zamboni was insubstantial, and research supported that skepticism.

For years, people with MS have been travelling around the world and paying thousands of dollars for an unproven procedure to widen their neck veins. (CBC)

In Canada, advocacy groups and politicians pressed for research to be carried out to determine whether Dr. Zamboni's claims had merit, or not. What resulted was that the Canadian Institute for Health Research, the MS Society and the governments of British Columbia, Manitoba and Quebec undertook to fund the research, carried out at the University of British Columbia. The study's first phase was a blinded study finding that the neck-vein narrowing was present equally among both MS patients and healthy controls.

A finding that the influential science journal The Lancet characterized as the theory's "death knell". What has now been released is the second phase of the study, where MS patients with vein stenosis were assigned randomly to receive the treatment, or unknown to themselves, a sham process instead, involving insertion of the catheter, but not completing the process by inflating the balloon. Patients had no idea which process they were subjected to, and nor did the doctors who assessed the results know which patients were treated and which not.

Dr. Juurlink of the University of Saskatchewan is an advocate of the Zamboni theory and methodology, and he stated his opinion that the trials appeared geared to proving CCSVI represented "quack science", rather than being carried out in the spirit of neutral scientific investigation, planning to fairly judge the outcome. Left out of the equation, as far as he is concerned is how it is that some patients find such amazing relief once the therapy has been performed on them.

MS genetic clues found

Failing The Critical Service Grade

"Transition can be tough, but it can also create opportunities."
"We are excited about what will be offered in 2017. Ultimately we know these changes [in the way the Multiple Sclerosis Society of Canada operates] will better serve people living with MS."
"The model we used to provide services in Victoria [British Columbia] was unique, and very expensive, which unfortunately made it unsustainable. The needs of people with MS are complex and critical, and as a not-for-profit we do not have the capacity to fill every gap."
Tania Vrionis, president, B.C. Division, Multiple Sclerosis Society of Canada

The MS Society of Canada's Victoria building on North Park street has been listed for $3.1M. (CHEK)

"The [MS] centre was somewhere safe where I could go with other people who were the same, who knew exactly how I felt when I said I couldn't do something. It was freeing. It freed us all to be ourselves."
River Grace, 67, Victoria, British Columbia

"Most people who use the centre don't have jobs. That's why they need it so desperately."
You've got somebody making $350,000 a year, and then you just took away services from a person earning $10,000 a year. There's something really wrong there."
To ask them to pick research over [alleviating] human suffering, you can't ask us to do that."
"A cure is not going to help the people who are suffering today [from multiple sclerosis]."
Susan Simmons, MS sufferer

MS Centre, Victoria, B.C.

For some reason that the medical community cannot understand, Canada has the greatest number per capita of people diagnosed with the central nervous system disease that the MS Society represents. One hundred thousand Canadians suffer from multiple sclerosis, the highest incidence of any country in the world. And the MS Society exists to serve that large demographic. To do so they have in the recent past offered to those whose interests they represent a venue for affordable physiotherapy and specialized exercise facilities.

The centre operated by the B.C. chapter of the MS Society operated as a template for what was assumed would be expanded services throughout the country. Now that template, in Victoria, B.C., is gone. The centre was closed last week leaving over 100 people in a province with 1,500 suffering from MS abandoned and the building that served them is now for sale. Simply put, the MS Society has decided to drop its emphasis on service to people with MS and focus instead on funding research into a cure for multiple sclerosis.

Along with deciding to focus on research funding, the MS Society made a decision to sell its properties and to use the proceeds of those sales for the funding of MS research. MS administrators have informed their members that they will lobby government at various levels to begin providing the type of services that the Society has been offering, instead. Which included physiotherapy services and grants funding housekeeping, snow shovelling, transportation and incontinence supplies.

Decades ago, the federal government announced that it would be cutting back on its funding of charitable medical organizations, to leave them with the responsibility to raise their operational funding from the private sector. Now, a charitable medical group is seeking to reverse that reality, unilaterally. With governments cash-strapped to provide the essential services they do maintain, how likely is it that they will obligingly take on yet another financial burden?

A reality that leaves the MS Society looking unctuously insincere. "We always assumed that the MS Society would roll this out [the type of services offered to MS clients in Victoria] across the country and start giving people the rehab that they need", complained another client of the Victoria centre. Typically, once local chapters close to consolidate operations, former clients find they can no longer afford the use of a gym. "It's more lonely. You don't get to get together with anybody", said Teresa Inger, in St. Thomas, Ontario. "It's sad", said the legally blind woman.

It is well worth noting that of the funding the MS Society receives, only 44 percent is used for charitable programs. Nine percent is spent on 'management' and administration, while 40 percent goes to fundraising costs. The latest MoneySense report on Canadian charities list the MS Society as having earned an overall grade of C+ for effectiveness, and a D for charity efficiency. Its top-paid executive earned over $350,000 in 2015, with eight other employees earning between $160,000 and $250,000. Nice work if you can get it....