It was a diagnosis seven years in the making.
Ever since the birth of her son in 2011, 46-year-old actress Selma Blair says that she had been experiencing a variety of neurological oddities. She sought help from a number of different doctors, but her concerns were repeatedly dismissed. She was extremely fatigued – but what new mother isn’t tired? She had memory and cognition problems, and couldn’t get her brain to think clearly – Mommy Brain, right? She felt some numbness and weakness in her legs, which affected her balanced and was investigated as a pinched nerve. She developed a tremor in her left hand.
Not until the fall of 2018, when her balance issues were causing multiple falls and her speech pattern was severely affected, did she finally receive a label for her troubles: multiple sclerosis.
MS is an immune disorder that attacks the central nervous system, comprised of the brain, spinal cord, and optic nerve. The disease targets the protective covering of the nerves, called the myelin sheath (kind of like insulation around an electric wire), causing inflammation and damage. Myelin is necessary for the transmission of messages from your brain to your nerves. If damage to myelin is slight, nerve impulses travel with minor interruptions; however, major damage can cause nerve impulses to be completely disrupted, and the nerve fibres themselves can be damaged. The extent and location of the damage affects the type and severity of MS symptoms.
MS has been called “the snowflake disease”, because the symptoms of MS can vary greatly among individuals, and present themselves in short bursts or long exacerbations. The most common symptoms include troubles with balance, memory, fatigue, numbness or tingling in extremities, and pain. It is three times more common in women than men, and nearly 100,000 Canadians are living with the chronic condition.
It is typically diagnosed after the patient complains to their primary care physician of the most frequent MS symptoms: tremor, numbness, troubles with cognition, balance, or urinary incontinence. The patient is referred to a neurologist, and receives a magnetic resonance imaging (MRI) scan of the brain, which reveals tell-tale lesions on the brain from the inflammation and breakdown of myelin caused by the disease.
The disease seems to afflict younger adults, striking women during their prime of life – the average age at which people are diagnosed is 32. At a time when many are reaching new heights in their careers, taking long-awaited trips to far-off destinations, or settling into first homes and starting their families, women newly diagnosed with MS report a wide range of feelings.
They can feel angry, anxious or tearful. They can also feel relieved, like Blair did, especially if they’ve spent years experiencing symptoms and trying to find a name for their affliction. They may feel shocked; some people have symptoms that start very suddenly, and they’re diagnosed within days. They may feel disbelief, like it’s unreal or happening to someone else.
Whatever a person might feel, it’s okay. There’s no correct way to react to the news of diagnosis – it is a lot to take in. Courtney Fraser, 35, was diagnosed with MS at the age of 32 after living with tell-tale symptoms of the disease for years. “There was a sense of relief that I finally knew what wrong with me and at least I could start to manage the disease,” Fraser says. “However, there was a lot of fear and ‘what-ifs’”.
Fraser also discovered a newfound resolve: to try and do whatever is within her control to alleviate symptoms and slow the progression of the disease. There is a lot of evidence that diet and exercise can have a positive effect on MS symptoms, and this Halifax woman took that advice to heart.
Fraser is now a personal trainer with Goodlife Fitness and is also a competitive bodybuilder. “After my initial panic, I just I woke up one day and decided to start doing everything I said I’d love to do,” says Fraser. “The reality that anything could happen to me any day made me realize I had better start doing these things before it was too late.”
Canada has one of the highest rates of MS in the world, and one explanation for this might be that we live in the great white north with our long, dark winters. Studies have shown that getting an adequate amount of Vitamin D can be linked to a decrease in risk of getting a number of diseases, including MS.
Most drug and complementary therapies are designed to slow the progression of the disease, and to alleviate some of the symptoms that pose day-to-day obstacles for those with the disease, such as tremor.
More radical treatments may be on the way. In a 2016 study published in the Lancet, Dalhousie University neurologist Dr. Jock Murray conducted a 13-year study of 24 patients with MS. In an interview with CBC, he explained the premise of the study by posing the following question: “If MS is caused by the immune system reacting against the brain, what if you gave them a new immune system?”
In simple terms, scientists took bone marrow out of the patient, gave them intensive chemotherapy, and then injected those bone marrow stem cells into the bloodstream. The results were stunning: Doctors found the disease stopped and the brain repaired the damage, Murray said.
Although the results were promising and exciting, the study was not without its risks: one patient died from complications related to the aggressive chemotherapy and stem-cell transplant.
Despite their diagnosis, many with MS continue to thrive. Fraser has learned to become an advocate for her own health. “I’m stronger and healthier now than before my diagnosis,” says Fraser. “While I can’t control my MS, I can control other aspects of my health and focus on preventative health care, like diet and exercise. I use them as tools to empower myself and manage my symptoms.”