This is the fifth story in a five-part series exploring multiple sclerosis in Canada and the implications the disease has on patients, health care and the country as a whole.
Kimberly McGinnis describes the early months after her diagnosis of multiple sclerosis (MS) as “a dark period.” After years of being misdiagnosed and dismissed by doctors, she received confirmation of her disease at a pivotal point in her life.
“I was new to Toronto, at the pinnacle of my career and trying to start a family, but suddenly everything was put on hold,” the 32-year-old benefits and disability analyst tells Global News. “The depression came so hard and I didn’t know how I was going to get out of it. It was scary.”
WATCH: Kimberly McGinnis describes the mental health impact of living with multiple sclerosis
For the estimated 93,500 Canadians who have MS, a mental health disorder is very likely a part of their every day lives. That’s because studies have shown that depression has a lifetime prevalence of 50 per cent and an annual prevalence of 20 per cent in people with MS; the most common psychiatric problems are depression, anxiety and bipolar disorder.
And considering it is believed that the number of people diagnosed will increase over the next decade or so, it’s important for the medical community to recognize that mental health issues aren’t the result of a diagnosis, but part of the disease itself.
“Some mornings, I would just break down in tears because I couldn’t shower or put on clothes,” due to the physical implications of MS, McGinnis recalls.
“It’s depressing and disheartening. But the disease is also driving a chemical imbalance in me. I don’t have depression because of my diagnosis but because the disease is in my brain.”
MS is an inflammatory neurological disease of the central nervous system that impacts the brain, spinal cord and optic nerves. Canada has the highest rate of MS in the world and the Public Health Agency of Canada anticipates diagnosis rates will rise to 133,635 by 2031. While there are theories as to why it’s so common in our country, the ultimate cause remains a mystery.
Animation: See how MS affects the body
“It’s helpful to understand that for much of the history of MS, it was considered a neurological disorder. It’s only been over the last couple of decades that there’s been recognition that it can have significant effects on aspects of behaviour,” says Dr. Anthony Feinstein, an associate scientist in the department of psychiatry at the Sunnybrook Research Institute in Toronto.
McGinnis jokes that MS is “all in my head,” because it is, in almost every sense. The disease is detected through a number of channels, including an MRI, which will more often than not reveal lesions on the brain (or the spinal cord). Those lesions on the central nervous system can lead to physical and cognitive problems, and they have a direct effect on mood.
“Studies show that depression and anxiety are common in MS — in fact, they can often occur early and even before MS diagnosis,” says Dr. John Fisk, a neuropsychologist and associate professor of psychiatry at Dalhousie University in Halifax.
“We’ve seen a spike in the number of health services people seek prior to a diagnosis of MS, and it shows increasing evidence of depression and anxiety. This is not just a reaction to being diagnosed with a chronic condition — people aren’t just sad because they have MS. Mental health issues are part of the disease.”
He also says that these psychological conditions can impact the severity of the disease and could even outpace its physical impacts.
Watch: Canadians discuss living with multiple sclerosis
In a recent study published in the journal Neurology, Fisk and a team of researchers found that in more than 2,300 people with adult-onset MS who were followed for 10.5 years, nearly 36 per cent suffered from a mood or anxiety disorder, which increased the severity of their disability.
Physical ramifications of the disease run the gamut and include blurred or impaired vision, problems swallowing, tingling or numbness in the arms and legs, cardiovascular complications, sexual dysfunction, bladder issues, osteoporosis and problems with coordination. Some people will eventually degenerate to the point where they will require a wheelchair.
Cognitive impairments are also wide-ranging and can be divided into changes in cognition and mood. The former includes difficulties with memory, a slowed ability to process information, issues with problem-solving and other executive functions, and impaired visual-spatial abilities.
“The cognitive impairments are more subtle than something like Alzheimer’s, but they can have a markedly negative effect on quality of life,” Feinstein says. “In primary progressive patients [the first phase of MS], cognition impairment rates are about 50 per cent, but once the disease progresses to the second phase, they go up to 60 to 70 per cent. A substantial number of people will have cognitive difficulties.”
Mood disorders mostly present in the form of depression, while bipolar rates are twice as high in people with MS versus the general population, Feinstein says. But some also experience lesser-known psychiatric disorders. A small percentage of people have pseudobulbar affect, an emotional disorder that causes pathological laughing or crying, and others may suffer from euphoria, which may have a positive ring to it but can have consequences for those around them.
“This is a major challenge for caregivers because the patient will tend to overreach in their abilities and try to do things they can’t do,” he explains.
Women tend to suffer more from mental health issues, although the disease is also three times more prevalent in women than men, so that may play a part; in addition, women in general, are more likely to suffer from anxiety and depression. However, Fisk notes, these mood disorders are disproportionately higher in men with MS versus men in the general population. Men are also more susceptible to the cognitive effects of the disease versus women, which Feinstein hypothesizes could be due to the protective properties of estrogen.
Although there is no known cure, pharmaceutical drugs are effective in treating the disease, both from a physical and psychological standpoint. Those suffering from depression and anxiety also benefit from seeing a psychologist who can treat them with cognitive behavioural therapy. However, there is no drug treatment to target cognitive disabilities.
“There’s an emerging area that suggests aerobic exercise, as well as a cognitive rehabilitation that uses computer-based programs, could bring about an improvement in cognition in some people with MS,” Feinstein says. “Much of that data has been collected in people with [first stage] MS, and we’re now looking to see if we can apply it to people with the more progressive forms of the disease.”
WATCH: Filmmaker claims he’s symptom-free of multiple sclerosis
For McGinnis, who is in the first phase of MS, finding the right medication has been a bit of a juggling act. But for now, she’s on the right cocktail.
“It’s always a process of not knowing if it’s going to help; they don’t really know what to tell you,” she says. “The depression is there and it follows me around, and the medication and therapy is only good for so much. But I’ve become comfortable with the fact that I have a significant potential to regress. I just have to be kind to myself and acknowledge the battle I’m going through.”