Photography by Kevin Wong Image by: Photography by Kevin Wong
hiking with her husband and their two Bernese mountain dogs in British Columbia's Myra- Bellevue Provincial Park. But all that changed, and quickly, when she returned to work after Labour Day weekend in 2008. "My left foot started to feel as if it was burning, like there was something hot on it all holiday Monday. And as the day went on, the feeling moved up my leg and the side of my body," recalls the 48-year-old former elementary-school principal from Kelowna, B.C. "The next day was the start of school, and I couldn't quite keep up with people walking alongside me in the hallway. By Thursday, I called HealthLink BC, where a nurse told me to go to the doctor immediately," she says. The doctor saw her hours later, then sent her to a neurologist, who, by the end of the day, had admitted her to the hospital and arranged for tests the next morning. That Friday, Michelle received the diagnosis: an aggressive case of multiple sclerosis (MS), a disease that affects the brain and the spinal cord. Her life hasn't been the same since. "I walked into the hospital [on Thursday], but by the time I left three days later, I couldn't get by without a walker." Within six months of her diagnosis, Michelle was unable to work, on long-term disability and using a wheelchair.
She endures spastic pain, which makes her muscles tighten "like they're being wrung out like a dish rag," and a burning sensation that "feels like my limbs are being dipped in boiling oil." But the most devastating symptom is severe fatigue.
"I'm only out of bed about nine hours a day: about four hours in the morning, then asleep all afternoon every day, then awake for five hours in the evening," says Michelle.
Medications help but may bring on unpleasant side-effects, from flu-like symptoms to severe bruising. "You have to keep juggling the cocktail of drugs, and every time you adjust it, there's a ripple effect," she says. "Between going back and forth to appointments, being ill quickly becomes your full-time job."
Michelle is one of an estimated 100,000 Canadians living with MS. Thought to be an autoimmune disease of the central nervous system, MS is on the rise, affecting more women than men at a ratio of three to one. A diagnosis can feel like the end of the world. "It's devastating," says Michelle. "My husband had to give up his delivery business to be my full-time caregiver. MS changes everything."
This is what MS looks like
MS is usually diagnosed in people aged 15 to 40, but it can strike at any time. Symptoms occur when the immune system attacks myelin, the protective sheath that covers the nerves. Without myelin, the communication between nerve cells is disrupted. "It's like a mouse eating the plastic coating on copper wiring," says Yves Savoie, president and CEO of the Multiple Sclerosis Society of Canada. About 85 percent of people living with the disease will have what's characterized as relapsing-remitting MS. "You have periods of relapses or exacerbations, which can be extremely debilitating and frightening, with paralysis from the waist down or total loss of your eyesight," explains Savoie. "Then, the inflammation of myelin will subside, and you'll recover and have a period of remission."
About half of people diagnosed with relapsing-remitting MS start to worsen
within 10 to 20 years of diagnosis as it evolves into progressive MS. It's possible to die from complications such as pneumonia, usually due to paralysis, but that's extremely rare. "We don't commonly have deaths from MS anymore," says Dr. Paul O'Connor, neurologist and director of the Multiple Sclerosis Clinic at St. Michael's Hospital in Toronto. But this good news comes with a badnews chaser: Canada has the highest incidence of the disease, and no one understands why.
A doctor who suspects a patient has MS will usually order blood tests, a neurological exam and an MRI scan to examine the brain and spine for lesions, or sclerosis—the Latin word for scars. "A lot of the time, MS is difficult to diagnose because the symptoms aren't recognized by family doctors," says Dr. O'Connor. Some of the more common signs include weakness, tingling in the legs, bladder problems and loss of vision and coordination, but every individual case is different. "MS is extremely variable across people," says Savoie. "There are people in extremely debilitating forms who are in wheelchairs and those who have had MS for 30 years and are running marathons."
Jenny Howe, 38, hopes to be in the latter group. A CBC traffic reporter in Calgary, Jenny was first diagnosed with relapsing-remitting MS seven years ago. She relapses once every nine months or so, when excruciating back pain and overwhelming exhaustion set in. "I could sleep for 12 hours and still wake up thinking, How am I going to get out of bed?" she says. "I'm on the air from 3 to 6 p.m., and I have to be ‘on.' I have to conserve all my energy for those three hours because the audience doesn't care if I'm having a bad day." After a few weeks, the pain and fatigue are gone, and Jenny goes back to feeling perfectly normal. "I go weeks where I forget I have MS," she says. Indeed, two years after being diagnosed, she ran her first half marathon. "I started to run because I thought, If my body is going to be weak during a flare-up, I better be as strong as I can."Finding relief
There's no cure for MS, but medications can help control the relapsing-remitting type of the disease. There are now 10 approved disease-modifying therapies (DMTs) in Canada that are administered orally, by injection or through infusion and that help decrease the duration and severity of relapses. "Without the attacks, many people can live disease-free and much more productively," says Savoie.
"Most patients who go on MS drugs don't have big problems with side-effects, although there can be a wide range of side-effects," says Dr. O'Connor. "The new drugs are quite well-tolerated." When side-effects do occur, depending on the drug, they might include mild hair loss, nausea, diarrhea and high blood pressure. Prescribing the right drug for a patient with relapsing-remitting MS involves trial and error. "If the MS is very aggressive, we'd probably pull out all the stops," says Dr. Mark Freedman, professor of neurology at the University of Ottawa and senior scientist at the Ottawa Hospital Research Institute. The riskiest treatment: a bone marrow transplant to replace the old immune system. "It can lead to long-lasting remission, but it comes with the risk of death for the men and women who undergo the treatment, and it has the additional high risk of sterility for women."
Michelle has tried four DMTs with varying side-effects. "You really have no idea if these drugs are working; you hope they're slowing the disease, but you can't measure it. My other drugs are for pain, and those are the ones that help," she says. "It's a really important distinction, because lots of people stop taking DMTs because they don't feel any better, but that's not what the drugs do."
Some MS patients—like Jenny, who has been taking oral steroids as a short-term treatment for relapses— are wary of taking medications. "My neurologist thinks I should and tells me they'll lessen the frequency of my relapses," she says, "but my relapses aren't that frequent. If I feel good most of the time, why would I want to take a powerful drug that is going to have side-effects? I don't want to tax my otherwise healthy body."
Neurologists argue that forgoing medications that slow down the progression of the disease may cause patients to be worse off long term. "It's a bit like treating hypertension," says Dr. O'Connor. "People with hypertension might feel fine, but you treat the hypertension to prevent heart attacks and stroke. In the same way, with MS you try to prevent an attack with medication so the person doesn't ultimately develop neurological disability."
Although there aren't currently any approved treatments for progressive MS, there is reason to hope. "We're currently in Phase 2 and Phase 3 of clinical trials for new agents for progressive MS," says Savoie. "The safety trials have been good, and there are early signs of effectiveness. For people with progressive MS or at risk of it, this is very exciting."
Exercise and a healthful diet may help people better cope with MS. Jenny tries to prevent stress-induced flare-ups with acupuncture, reiki and yoga. "I consulted a naturopath two weeks after I was diagnosed and removed the foods that are known to cause inflammation, like gluten, dairy, legumes and eggs," she says. While no particular type of diet has been proven to prevent flare-ups, Jenny believes it has worked for her. "I feel like I'm taking care of myself."
For Michelle, coping with the disease means maintaining a positive attitude. "If you sit around moping, you're going to feel worse, so I've tried to keep myself as busy in a variety of ways." That has included taking a seated tai chi course and getting involved in the MS Society, where she is now cochair of her local chapter and her husband is a board member. A former musician, she also uses an iPad app to write musical compositions for her granddaughter to play on the piano. "You do what you can to fit the abilities you have now.
Check out these five potential risk factors for MS.
|This story was originally part of "When MS Closes In" in the April 2015 issue.
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