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'It’s not fun': Living with multiple sclerosis, Canada's invisible disease

May is MS Awareness Month. Canada has one of the highest rates of the disease in the world with an estimated 93,500 Canadians living with the neurological autoimmune disease.
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When a 23-year-old Audra White — an undergraduate of economics and international development at the time in Halifax — started feeling a consistent tingling in her hand and wrist, she initially thought she had sprained it while doing yoga. But the tingling wouldn’t go away and started to spread up her arm, she knew something wasn’t right, so she thought she’d see a doctor for it.

“I was thinking, ‘Oh god, I know things are bad when they start to spread,’” she recalled. “So I gave it another week and if it hadn’t  changed or if things progressed then I’d go see a doctor. But of course, during the week, it just started going up and up and going pass my shoulder and over to the right side of my neck, and then I was like, ‘Oh no.’” 

The problem was, the Calgary native didn’t have a family doctor in Halifax, so went to a walk-in clinic — something she feared wouldn’t get her the consistent answers she needed.

They initially weren’t concerned with her symptoms, citing a pinched nerve in the base of her neck. 

So they ordered an X-ray, but it showed nothing, which they revealed to her in a follow-up appointment two weeks later. But just as the doctor was about to send her home and leave the room, she begged for him to stay, revealing that she had been falling over lately.

That’s when the doctor said that with the new symptom, what White was experiencing was neurological.

So he ordered a CT scan. But fearing this could be something very serious, she went to the nearest ER, told them her case. They decided a CT wasn’t good enough and ordered an MRI.

The MRI had shown scarring — also known as lesions — on her brain, and told her it was likely multiple sclerosis.

The next year was tough for White as the autoimmune disease progressed aggressively. She had experienced four flare-ups, tried medications to help manage her symptoms— many of which didn’t help.

Today, White is based in Ottawa and is on a medication that works for her — one the has been able to manage the symptoms of her relapsing-remitting multiple sclerosis.

Since her diagnosis, White’s main symptoms have been fatigue and cognitive impairment like memory fog and forgetting her words.

“I think it’s funny how you go through school to become smart but this can sometimes make me feel so silly,” White said. “It's definitely made me more self conscious to speak out loud."

White is one of 93,500 Canadians living with multiple sclerosis — a disease that is expected to be diagnosed in more than 133,635 Canadians by 2031, according to the Public Health Agency of Canada.

Multiple sclerosis is a disease of the central nervous system (brain, spinal cord and optic nerves). It attacks the myeline sheath — the protective coating around the nerves, causing inflammation.

The MS Society of Canada explains that the myelin is important for the transmission of nerve impulses through the nerve fibres. This can disrupt the transmission of nerve impulses, causing an array symptoms, like issues with balance, dizziness, cognitive impairment, fatigue, gait, pain, numbness, tingling, tremors, weakness and more.

“This is a disease that really is exclusive to the brain, spinal cord and optic nerves,” Dr. Mark Freedman, director of the multiple sclerosis research unit at the Ottawa Hospital, explained . “Unlike other autoimmune diseases that can affect many different parts of your body, this only affects those three structures in the central nervous system.”

The cause of MS is unknown and there’s no cure — one cannot die from MS, but can die as a result of complications from the disease.

According to Freedman, multiple sclerosis is often referred to as an “invisible disease” and often takes a combination of factors to diagnose.

Canada has one of the highest rates of MS in the world, the MS Society of Canada reports — and researchers aren’t sure why that is.

There are four different types of MS: clinically isolated syndrome, (a single episode of neurological symptoms that could suggest MS), relapsing-remitting (unpredictable but clearly defined relapses, also known as attacks. It is also the most common form.), secondary-progressive (progressively worsening and fewer relapses) and primary-progressive (the slow accumulation of the disability).

Women are also two to three times more likely to be diagnosed than men.

MS is usually diagnosed between 20 and 49 years of age, with the average onset of symptoms being 32 years old, Statistics Canada reports. The life expectancy of MS patients are typically shorter, with the most common cause of death being related to complications like infections.

Despite commonly held beliefs of what a patient with MS should look like, it’s not always obvious, Freedman says. Not every patient with MS, for example, requires an assisted walking device. In fact, only about 57 per cent say they don’t require a wheelchair, cain or walker, Statistics Canada found.

“There’s a profile where you see common things, but honestly, if you Google symptoms of MS, it’s everything — whatever the brain controls,” Freedman said. “It’s hard to sometimes put (those symptoms) into perspective.”

While Canada and the world has made headway into understanding the disease and how to manage symptoms — which can be done through medication, diet and exercise, among other ways and methods (some experimental, some not) — there is still a ways to go in understanding what makes the disease tick and exist.

“Although we have lots of ideas as to perhaps what the cause and the pathophysiology — how the disease comes about… but as to exactly what drives the disease and how it initiates and how it develops in individuals it’s so different in everyone so that’s why it’s been so hard to nail down just one thing that seems to drive MS,” Freedman said. “We just see different types of inflammation in everyone.”

But for Freedman, the future of MS in Canada looks positive as researchers come up with new ways to understand and treat the disease — research that would be beneficial to people like White.

“I think we’ve done amazing work in this country — not only with the basic research side, and trying to uncover mechanisms of how the diseased now looks and at ways we’re able to repair some of the damage that’s occurring, but it will be a pioneered replacement of the entire immune system on our site,” he said. “And our patients that have gone through that type of procedure are literally free of new activity and wouldn’t have to take medications at all for the rest of their life.”

Until that becomes the reality, patients like White will continue to try new treatments as they become available, manage their symptoms the best they can with the help of specialists and help others to understand the often not-so-obvious disease that impacts Canadians at such a high rate on the world stage.

While White says she feels like she’s still coming to terms with her diagnosis three years later, it’s important for her that people understand that there is variability with the disease — not everyone is the same, feels the same combination of symptoms, has the same abilities or capabilities or has the same overall experience with it.

Even for White, the disease is so unpredictable — the fluctuations that can come with MS has made planning for the future difficult, something she has always taken comfort in being able to do. But with not knowing if she’ll need a walking aid in a few years (she doesn’t use one now), for example, she feels like she’s limited in what goals she can set for herself long term. 

“I think sometimes I go through periods of profound gratitude (for being diagnosed early) and was put on the best drug within nine months of being diagnosed, which I’ve been told is really crucial,” she said. “But I know I have the best medical support system — that’s the silver lining. But I’m mad. It’s not fun; I don’t love this. I think I manage it and I think I have come to face it with some grace I think, but I’m mad. I used to be that type of person who would just plan ahead and have ambitions of —not necessarily a five year plan — but at least I could work towards something, and I think MS has really taken that away.”

Despite her anger towards the unknown, she finds the silver lining whenever and wherever she she can, she says.

“But I am grateful for the health that I do have today, grateful for the profound empathy it’s given me," White added. "In some ways it did force me to grow up — so that’s probably a good thing.”

 

20200517_msnmbersMS in Canada (Graphic/Dani-Elle Dubé)

 




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About the Author: Dani-Elle Dubé

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