As if having two children in elementary school wasn’t enough to keep her busy, a decade ago Marilyn Lenzen was also working full-time and remodelling her house. The fact that she was exhausted all the time seemed to make sense. But she knew something was amiss when she started feeling burning pain in her legs.
Her younger sister had been diagnosed with multiple sclerosis a few years earlier, so she suspected she too could have the potentially debilitating condition. But Lenzen, then 40, still had to brace herself for the news.
“It’s always a shock when your doctor says you have MS,” Lenzen tells the Georgia Straight in a phone interview. “You have to go through a grieving process. Living with this disease changes your life.”
MS attacks myelin, the brain and spinal cord’s protective covering. The resulting inflammation of and damage to the myelin disrupts the normal flow of nerve impulses.
Effects of the complex disease vary greatly from person to person and range from dizziness and impaired speech to vision problems and paralysis.
What Lenzen notices the most is extreme fatigue: she has to make sure she gets a solid sleep every night and naps or puts her feet up during the day. She has the relapsing-remitting type of the disease, which means it goes through phases, as opposed to the secondary-progressive form. In 2001, she had so little strength she had to use a scooter to get around. These days, she walks a few times a week and plans on participating in the Multiple Sclerosis Society of Canada B.C. and Yukon division’s Scotiabank MS Walk on April 25.
Lenzen also takes several medications, known as disease-modifying drugs.
But the treatment of multiple sclerosis could change dramatically if the results of a controversial approach by an Italian doctor can be backed up by rigorous study. And a Vancouver team hopes to be part of that research.
Paolo Zamboni, a professor of medicine at Italy’s University of Ferrara whose wife has MS, found that more than 90 percent of a group of people he studied with multiple sclerosis had malformations or blockages in the veins that drain blood from the brain. He called this condition “chronic cerebrospinal venous insufficiency” (CCSVI).
By using a simple—though experimental—procedure similar to angioplasty, he dilated the veins to clear the blockages. His patients experienced tremendous and immediate relief of symptoms. They nicknamed the surgery the “liberation procedure”.
Vancouver neurologist Anthony Traboulsee, medical director of UBC’s MS clinic and clinical-trials group, acknowledges that the approach has promise and its potential is exciting, but he cautions that solid evidence is still lacking.
“There have been two papers written by the same person,” Traboulsee says in a phone interview. “In medical circles, that’s pretty soft. There’s not a lot of science yet.”
He notes that in Zamboni’s study, there was no group of patients who acted as “control” or untreated subjects, without which it’s impossible to rule out bias or the placebo effect.
There are two questions that need to be answered, Traboulsee adds: do all people with MS have narrowing of the veins? And will surgically opening the veins prevent the disease from causing new damage?
“It comes back to the vascular question,” Traboulsee says. “[In the Italian study,] after that narrowing was dilated, people felt better. It’s a big leap that feeling better is a cure for MS. It might improve their symptoms”¦but does it truly stop the disease from getting worse? It’s probably too much of a stretch, as much as we want that.”
What Zamboni’s research hasn’t taken into account, Traboulsee says, is that many people with the disease feel better “spontaneously”.
“If we don’t control for that variable, we won’t know if it’s because of the treatment,” Traboulsee says. “He admits that this is its biggest weakness.
“That’s not to say his study was inappropriate. It’s a new idea. It’s pilot data. It’s an intriguing concept, but it’s not the end of the line. Now the hard work begins.”
Traboulsee and his team are applying for funding from the MS Society of Canada to further investigate CCSVI. The UBC MS clinic belongs to the Canadian Network of MS Clinics, which concurs that more research into Zamboni’s findings is urgently required. A nationwide study is a possibility.
Traboulsee says he empathizes with people who have MS who want answers now.
“The challenge with CCSVI is that it brings up an emotional response; it draws up a lot of passion,” he says. “It’s understandable, considering this is a disease that really alters people’s perception of illness. When you have the flu, you get better. This is a lifelong disease.
“It hits people in the prime of their life, between ages 20 and 40, when people are getting married, having kids, developing their careers; it impacts on so much.”
He says that so far most local patients have accepted the need for more scientific testing but some have opted to go to other countries to get the procedure done. It’s a move he doesn’t suggest.
“We recommend people on a treatment plan stay the course until the dust has settled,” Traboulsee says. “People are anxious for cures.”