Ruminations

Blog dedicated primarily to randomly selected news items; comments reflecting personal perceptions

Tuesday, December 12, 2017

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

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