caution larry

Hi, I’m Kim! This site provides a little insight to my journey of being diagnosised with Remitting Relapsing Multiple Sclerosis on October 26th 2004. I review books and documentaries, post MS-related news, and share my photos.

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Thursday, April 30, 2009
Stem-cell transplant 'reason for optimism': MS patient
Go Dr. Freedman! Some of you may recall from my podcast days that Jennifer Molson was also on this clinical trial and was doing well. I wonder how she is now too. Read on my friends! Would you do this treatment?

Alex Normandin, 26, was diagnosed with multiple sclerosis nearly two years ago.

He had learned in medical school that MS is an unpredictable, often disabling illness of the central nervous system.

Symptoms vary but can include blurred vision, fatigue, problems with co-ordination, speech and muscles, loss of balance, and paralysis.

Normandin figured time was on his side because normally MS progresses very slowly, but he was devastated to find out he had an extremely aggressive form of MS, and he would likely be using a wheelchair within months.

Thankfully, he was fast-tracked for a cutting edge, experimental treatment: a bone marrow stem-cell transplant.

The procedure is not without risk — It is fatal in five per cent of cases because of the toxic chemotherapy drugs used to prepare a patient to receive a stem-cell transplant.

First, powerful chemotherapy drugs are used to erase patients' existing immune cells, leaving them temporarily open to infection.

Then, a stem-cell transplant "reboots" the body's ravaged immune system with a fresh one, minus the disease.

The experimental treatment trial had been run since 2000 by Ottawa bone marrow transplant expert Harold Atkins and MS neurologist Mark Freedman.

It isn't for everyone, Freedman noted, adding: "The alternative has to be so bad that death is on the table as an option."

Twenty four people took part in the trial. It was open only to those with rapidly progressing MS who failed to respond to routine therapy and who were also likely to become severely disabled.

Normandin became patient 19. His transplant took place in December 2008. It worked.

Not only does the disease appear to have stopped its progression, but Normandin says he feels his co-ordination and strength improving.

Normandin is buoyed by the treatment's eight-year track record — none of the 24 patients have suffered a relapse or a brain lesion.

Freedman stops short of calling it a cure, but this treatment seems to arrest the illness and allows some people to recover faculties they had lost.

"We're hopeful for Alex but it's too soon to say," Freedman said. The best improvements showed up 18 months after treatment and in patients with the least disabilities, he said.

In people with significant disabilities, "there's . . . no way of reversing it," Freedman said.

Freedman's team is now looking at why some patients get better and others don't.

One theory is that the stem cells are doing more than "rebooting" the immune system, he said. Perhaps the cells are migrating to the brain or to damaged sites and directing the repairs, he said.

The trial procedure costs would be about $50,000 to $60,000 per patient.

It isn't available because it has yet to be approved. But the treatment would pay for itself within three years because the usual MS patient uses about $20,000 worth of drugs annually, Freedman noted.

About 1,000 new cases of MS are diagnosed in Canada each year. Some 55,000 to 75,000 Canadians have MS.

"Just one more reason for optimism, especially for the (thousands) of MS patients in Canada," Normandin said."