Multiple Sclerosis: Why Patient Education Is Critical
Healthy Aging The pins and needles started in her right hand. Carrie MacLean was a 28-year-old newlywed, working in a high-stress job as an IT team lead.
Within four days of feeling pins and needles in her she lost functionality in her hand. She couldn’t even pick up a pen. But then she gradually returned to normal, like the nightmare never happened. Nearly two years later, she had another attack and received a diagnosis: multiple sclerosis (MS).
“I was petrified,” she recalls. “I thought I had a couple of years to live — it was a death sentence. That’s what I thought.”
She threw herself into learning everything she could about MS. The more she read, the more she realized: “This is not a death sentence. This disease is manageable. You can live a long life.”
MacLean has the most common variation of the disease — relapsing-remitting MS — which is characterized by attacks, followed by remission. The danger is the disease might deteriorate to secondary-progressive MS and increasing disability, which happens to about half of people within 10 to 20 years, according to the MS Society of Canada.
“The research is changing so fast. You need to be your own best advocate.”
According to the blog by Dr. Karen Lee, An Inside Look at MS Research, there is, however, a silver lining for people with progressive MS as well as relapsing-remitting MS— early treatment. Research suggests that there is growing evidence showing that treating MS as early as possible can have a significant impact in long-term treatment response, quality of life, and disease progression in people with MS.
Ten years have passed for MacLean and you can’t tell she has MS. People don’t see the pins and needles. She doesn’t limp. “I don’t look like I have MS. My life is relatively normal,” says MacLean. She lives in Waterdown, ON with her husband and two daughters, who she had after her first MS attack. She does yoga and attends an MS support group. But life has changed.
When she realized stress and lack of sleep were her triggers for attacks, she left her job to raise her two girls.
Finding the right treatment
The first MS treatment she tried made her anemic. The second required daily injections. Terrified of needles, her severe panic attacks meant it wasn’t an option. When a new oral treatment option was coming to the Canadian market, she knew that was the treatment she wanted.
“The research is changing so fast. You need to be your own best advocate,” MacLean said. She brought her research to her neurologist and he teased her. “He said, ‘How do you know so much?’ I said, ‘Because I’ve done my research.’” Carrie experienced mild side effects like flushing and nausea, which stopped after two months, and she has been happily on the drug ever since.
Her advice for new MS patients is that they do their own research on legitimate websites. “In doing that, you become less scared,” she says.