Thirty years after MS diagnosis, gratitude outlasts fear

One day in the mid-’90s, Montrealer Pierre Bérubé realized he couldn’t feel his left leg. A few months later, it happened again — only worse. “I had much, much less strength, less sensation to touch, and my balance and co-ordination were affected as well,” said Bérubé, 56. “It wasn’t just a nerve acting up — it was really something much more serious.” In 1996, Bérubé received a diagnosis of multiple sclerosis — a chronic autoimmune disease of the central nervous system that attacks the protective

coating around nerve fibres — sparking fears about his future. “I was completely blindsided,” he said. “When it’s a disease that can be disabling, your mind immediately goes there.” Bérubé was swiftly transferred to the multiple sclerosis program at the Montreal Neurological Institute, where he has received his care ever since, allowing him to lead a relatively normal life. Thirty years later, he spoke of his gratitude through tears. “I’ve never seen service like this anywhere else in the health-care system,” he said. “I don’t

know how to thank them.” Over time, through his treatments, Bérubé’s symptoms have remained relatively stable. They’re mainly related to energy levels; his left leg, to which he must pay extra attention while walking; and, most recently, some cognitive decline. “Not at the beginning, but now I notice that concentration is more difficult,” he said. “The same goes for memory. I have to take a lot more notes.” In the time since Bérubé received his diagnosis, treatment for MS has drastically improved. For the first

18 years, he was given injections of interferons — signalling proteins the body naturally produces as a defence mechanism against pathogens — three times a week. “Those flu-like sensations? You experience them every three days,” Bérubé said. Following a relapse in 2014, he was able to take a daily pill instead, and, as of 2025, receives an injection of monoclonal antibodies once a month, with no side effects, aside from immunosuppression. “It’s been a very big shift over the past 10 years,” said Dr. Alexander

Saveriano, Bérubé’s treating neurologist and the fellowship director in MS and neuroinflammatory disorders at the Neuro. “Thankfully, we’re at a point now where we have much more effective treatment.” In 2026, relapsing-remitting MS — the most common and treatable form, which is what Bérubé has — can be managed well if caught early, Saveriano explained. “It’s really about trying to stop the disease in its tracks as best we can to try to prevent further injury to the brain,” he said. “The new treatments are

very effective at doing that.” Bérubé experiences relapses on average every three years, which can look like waking up one day and not being able to type on a keyboard properly. “I’ll be more fatigued, I’ll feel numbness in my arm, and even more numbness in my leg,” he said. “That’s when things become very anxiety-provoking, and you feel extremely vulnerable.” But the Neuro provides care almost immediately in the form of steroid treatments, said Bérubé, who tenderly mentioned each member of his care team

by name. “The thing is, relapses can happen almost overnight,” he said. “When you’re in that vulnerable state, they’re incredibly responsive. … They know that the sooner you start steroids, the sooner you can recover from an attack.” In addition to providing treatment to manage the effects of MS on the body, the hospital also provides multi-layered care to help manage symptoms, complete with professionals like physiotherapists and occupational therapists. “I think that that’s absolutely what we strive for, is that comprehensive care where patients

feel supported along this journey,” Saveriono said. “From diagnosis, which is a huge shock to most people, and then all the way through as they deal with the ups and downs of the disease.” The exact cause of MS is unknown, Saveriano explained. There are a number of theories, such as that it might be triggered by the Epstein-Barr virus or a vitamin D deficiency. “Countries that are further from the equator have higher rates of MS,” he said. Genetics also play a role, but

“no single gene is responsible for MS,” Saveriano said. “It seems to be a combination of genetics, environment, and possibly viral exposure.” When it comes to MS treatment today, one of the challenges that remains is stopping the progressive side of the disease, he said. While the relapsing part — with sudden episodes — can be treated effectively in most people, gradual progression over the years is “a bit harder to treat, and that is still an unmet need in MS care.” Saveriano added some

of the treatments being investigated at the Neuro seem promising. “There definitely is more hope,” Saveriano said, adding at the hospital, health professionals work closely with scientists who devote most of their time to research. Both teams being in the same place “really serves as a breeding ground for advancing the science,” he said. “Those channels of communication are always open … so I think that really helps us.” Yuan Ding, a researcher at the Neuro and McGill University, hopes to advance early screening for

MS so patients can start preventive treatments before neurological damage from the disease even begins. He was inspired to pursue MS research because his girlfriend is a patient. In a recent study published in Annals of Neurology, Ding showed MS-specific proteins in the blood may be detectable years before the clinical onset of the disease. “My hope is that this one day, this could be translated into something like a blood test,” said Ding, who researches under the supervision of Dr. Adil Harroud. As it

stands, diagnosis typically involves MRIs and lumbar punctures after neurological damage has begun, Ding explained. He added the Neuro is collecting samples from MS patients to see if the results of the study, which was based on blood from the UK Biobank, can be replicated. Bérubé himself has also participated in a study at the clinic, which he explained focused on the relationship between physical activity and energy levels in MS patients. “This study showed me that the more physically active you are, the more

energy you can have,” he said. Prioritizing nutrition has also helped with his energy levels over the years. Despite the challenges that inevitably come with having an autoimmune disease, Bérubé said he feels like he’s happier now than he would have been had he not had MS. “I think you quickly realize that now you have to make the most of life,” he said. “You do everything you can, and you can also trust science to help you live a life like everyone else. That

gives you the energy to keep going.”

multiple sclerosis, Montreal Neurological Institute, Pierre Bérubé, Alexander Saveriano, relapsing-remitting MS, monoclonal antibodies, interferons, steroids, cognitive decline, early screening