You’ve been diagnosed with MS: What’s next?
The reasons for hope, and the importance of having an informed conversation with your doctor
It was 1984 when a multiple sclerosis (MS) diagnosis upended then 24-year old Marie Heron’s life. Despite the passage of time, Heron’s memories of her fear and uncertainty remain vivid. She recalls peppering her physician with a stream of questions.
“My first questions were ‘Am I going to die?’; ‘Will I be in a wheelchair?’; ‘Can I have children?’” says Heron. “My doctor had to admit he had no answers to give me.”
While knowledge about MS — as well as this disease’s treatment options — have advanced significantly over the past 34 years and offer newfound encouragement, she says an MS diagnosis today remains frightening and overwhelming. Heron’s desire to support and encourage others who have MS led her to start her Truth Be Told podcast, which now boasts hundreds of followers.
“The more I talk to people, the more I understand how severe the depression and anxiety can be for newly diagnosed MS patients,” she says. “I want to help them learn the facts.”
For example, Heron says many people with MS don’t end up in wheelchairs, in part because many disease-modifying drugs are available today. “I also share strategies for managing MS and overall health, and for setting goals in all aspects of your life.”
Initiatives that increase MS patients’ knowledge of the disease and available treatments are extremely valuable, says neurologist and MS specialist Dr. Xavier Montalban, professor of medicine and director of the neurology department at the University of Toronto.
“Patients have much to consider when they receive an MS diagnosis, and when they’re well informed they and their physician can work together to make decisions,” he says.
Dr. Montalban encourages those facing an MS diagnosis to recognize that while it is a serious disease, the prognosis is generally much better than in the past. “Fortunately, we have more treatment options and more knowledge about the benefits of early treatment,” he says.
Dr. Montalban believes treating patients with the most effective therapy as soon as possible after diagnosis is advisable. “Every time you have a flare-up of inflammation, it could set the stage for further neurological damage,” he says. “Early, efficacious treatment can often minimize the risk of relapses and halt the progress of the disease.”
Patients should also explore treatment delivery methods that best suit them. “Some medications are taken by self-injection and some are pills you swallow. Other treatments are administered intravenously in a clinic or hospital. A patient should consider what they’re most comfortable with — such as, do they have a fear of needles or do they find it hard to remember to take pills?”
Other important factors, such as prognosis and inflammatory activity, should also be taken into account, he adds. Key questions also centre on the balance between a drug’s potential side effects and its effectiveness. “As neurologists, we look at both the risks of side effects and the benefits of the treatment, and we encourage patients to do the same,” Dr. Montalban says.
Beyond choosing a therapeutic regime, both Dr. Montalban and Marie Heron suggest the newly diagnosed continue to make and pursue their life goals.
“One neurologist spoke about ‘pragmatic hope’ — how setting and reaching personal goals eases depression and helps you better manage your MS,” says Heron.
PATIENTS HAVE MUCH TO CONSIDER WHEN THEY RECEIVE AN MS DIAGNOSIS, AND WHEN THEY’RE WELL-INFORMED THEY AND THEIR PHYSICIAN CAN WORK TOGETHER TO MAKE DECISIONS ... FORTUNATELY, WE HAVE MORE TREATMENT OPTIONS AND MORE KNOWLEDGE ABOUT THE BENEFITS OF EARLY TREATMENT.
— DR. XAVIER MONTALBAN, UNIVERSITY OF TORONTO