Scott Marsolais’s multiple sclerosis was difficult to diagnose.
In January 2012, his toes began to go numb. This numbness eventually spread into his feet and up to his shins. Marsolais sought medical advice, but after two inconclusive MRIs, the numbness had moved up to his hips.
While he waited for the results of a third MRI, specifically of his spine, his mobility began to deteriorate. He could hardly get out of bed, he recalls.
The results of his spinal MRI showed that his spine was inflamed. Doctors hooked up Marsolais to an IV drip of steroids and diagnosed him with transverse myelitis, which can be caused by MS.
After a lumbar puncture test, where doctors extract cerebrospinal fluid, doctors changed Marsolais’s diagnosis to clinically isolated syndrome (CIS) MS. Marsolais chose once-a-week injections to treat his CIS, and the side effects made him feel as if he had the flu. But the treatment seemed to work. Until he “relapsed” in August 2012.
“My left eye went blurry, and I lost colour vision in it. So at that point, it is your second relapse; you have MS. It’s not CIS,” the 26-year-old explains.
MS is an inflammatory disease that affects the brain and spine. Three Canadians are diagnosed with MS each day.
“Its symptoms vary and oftentimes cannot be seen. Many, but not all, people with MS experience problems with mobility, speech and vision, in addition to extreme fatigue and cognitive issues,” Laurel Mackenzie, regional director for the Eastern Ontario chapter of the MS Society of Canada, says. “People experience symptoms differently, and each individual’s symptoms may change or vary over time.”
After his official diagnosis of MS, Marsolais reached out to online support groups, including one titled We’re Not Drunk, We Have MS, he says with a laugh. “I walk into walls all the time. It’s amusing; I laugh at myself.”
He also tried a variety of medications before settling on Gilenya, which costs $48,000 per year.
Coincidentally, $48,000 is the amount Adam Goldberg has raised for MS charities over the past decade.
Diagnosed with MS in 2004, Goldberg says he first knew something was wrong when he had persistent trouble urinating.
A feeling of spiralling downward overcame him when he was first diagnosed, the 38-year-old recalls. But his diagnosis acted as a “wake-up call,” and Goldberg says he owes the positive shift in his life to the disease.
“[I asked myself], What now am I going to do? Feel sorry for myself? No. I decided I’m just not going to do that. It’s not like overnight I became a brand new person. It’s been a gradual change. It’s a different perspective. I call it a new lease on life,” he says.
Goldberg likens disclosing that one has MS to divulging one’s sexuality.
“It’s not like I have been shunned. I don’t try to hide it. It’s like if you hide that you are gay from people. It’s been fine.”
“I suppose if I ever were to be shunned, fuck them anyways,” he adds. “If you’re that superficial and that vain I probably don’t want to know you.”
Marsolais says his diagnosis has made dating difficult, especially since MS can cause erectile dysfunction, though medication can help alleviate the symptom.
“It’s hard enough finding a guy just being gay. Now try finding a guy when you have a degenerative disease where if you tell them they’ll be, like, ‘Aw shit, I can’t date this guy. I’m going to have to take care of him for the rest of his life,’” he says.
Still, the medication is helping — so much so that Marsolais has signed up to play league baseball this summer.
“I can’t do everything I used to be able to do; I’m slowly getting there,” he says.
New research has given hope to many living with MS. In the past decade, several studies have led to the development of clearer and more accurate imaging methods for detecting lesions in the brain and more effective treatment for managing physical and cognitive symptoms, Mackenzie says.
“[We now have] a more in-depth understanding of the mechanisms of MS disease, as well as how damage caused by MS can be repaired,” Mackenzie says.