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Living with MS

Oshawa woman talks about being diagnosed and the treatment that brought herself back

Multiple Sclerosis

Courtney Lee was diagnosed with multiple sclerosis when she was 20, when she was working toward her degree in criminology. With her symptoms subsided, thanks to a new treatment, she is spending as much time as she can with partner Joe and daughters Paytin, 2, seen here, and Marion, 5.

By Graeme McNaughton/The Oshawa Express

Courtney Lee wanted to be a police officer.

It was something she had always wanted to do, and it was something that she was going to school for, working toward her degree in criminology.

However, after having some pain in her left eye, Lee decided to visit a local clinic to see what was going on.

“I had blurred vision in my left eye and it hurt to move my eye back and forth and up and down. There was something wrong,” Lee tells The Oshawa Express. “I went to a clinic and they told me I had pink eye, and I thought that didn’t seem right. This isn’t pink eye. So then I went to the Oshawa hospital and again, ‘Nope, it’s pink eye.’ A couple days later, I was taking the drops and I thought that this doesn’t feel right.”

It was then that Lee decided that she needed to get a third opinion.

“So then I went to the Bowmanville hospital and one of the doctors that was there was an eye doctor…She told me there was nothing wrong with my eye, but she would still send me to an ophthalmologist,” she says. “I saw him a couple days later and he said the same thing. There’s nothing wrong with the eye itself.”

After having an MRI and having blood work done, Lee was sent to see a neurologist. That was when she received the news that would shape her future.

“All those results came back, and that’s when I found out I had MS.”

To make matters worse, Lee found out that her lifelong goal of becoming a cop was now out of the equation.

“Once I got that news, I was talking to some of people I knew who were police officers and they said, ‘Yeah, you can’t be a police officer with MS,’” she says. “It crushed me because I had spent thousands of dollars on schooling to become a police officer, and that was down the drain. I stopped doing my studies at that point because I was in (classes for) my degree in criminology. About three quarters of the way through, only a few more courses to do. But I knew I needed to find something else. A new goal.”

To help make ends meet, and with her MS manageable, Lee went to work, taking on a job working midnight shifts at the Sobey’s warehouse in Whitby. However, after having Paytin, her second daughter, Lee knew she couldn’t do that anymore.

“After I had her, about 10 months after, I knew I couldn’t go back to midnights. Not with two kids. There’s no way I’ll ever get sleep,” she says of what led to her decision to go back to school, choosing to attend Trillium College in Oshawa to become a community service worker.

The MS returns

Another road bump came in Lee’s life during this time: her MS had returned.

Eight months after (Paytin) was born, that’s when the MS started to get bad,” she says. “I was breastfeeding, so all the hormones and stuff were still in my body so it was still kind of in remission. But after, it was like the floodgates opened and the MS was like ‘Here you go, I’m back.’”

Lee has relapsing-remitting multiple sclerosis. This means that her symptom’s are not constant. Instead, they come and go.

“It’s not constant and it’s not a constant deterioration. It’ll come here, say ‘Don’t forget about me, I’m still here,’ and then it’ll go away for a while and then it comes back again,” she says. “But the episodes were coming to me closer and closer together. It was starting to worry me.”

Lee, who loves to play soccer during the summer months, was beginning to lose something that was very important to her: mobility.

“There were times where I could barely even hold (Paytin). I couldn’t carry her to her bed or anywhere really because I was so unstable on my feet. My balance was off,” she says. “At points, my legs were numb to the point where I couldn’t even feel them. I would walk and at some points I’d be dragging one of my legs. It was like my body was telling it to move, but it wasn’t responding.”

Thankfully, Lee had her family and friends by her side to help her out.

“Whenever I had an episode or a flare up, I had lots of support around me, which was amazing,” she says. “I’m fortunate that way. Especially when it came to the kids because at that point, (oldest daughter) Marion…wasn’t in school, so I had both of them and Paytin was just an infant.”

However, even with the assistance, Lee decided she needed to do something about her symptoms and to take her life back. That was when her neurologist recommended a new type of treatment. It was so new, in fact, that Lee would become the first person in Canada to take it outside of clinical trials.

The arrival of Lemtrada

Alemtuzumab – more commonly known under its trade name, Lemtrada – is a therapy regimen that was originally designed in the 1980s to treat chronic lymphocytic leukemia, cutaneous T-cell lymphoma and T-cell lymphoma. Derived from a cultivated rat antibody, the treatment was found in the last decade to be an effective treatment for relapsing-remitting multiple sclerosis – what Lee has.

The treatment is delivered via an intravenous infusion for five consecutive days, and then through another three-day treatment one year later.

Lee says the treatment – for which she was the first to receive outside of clinical trials in Canada – has made a world of difference.

“Since I did the Lemtrada treatment, I haven’t had one episode. I haven’t had anything,” she says. “I feel that I have more energy than I did prior to treatment and more energy than I used to have. Before all this MS stuff, before the kids and everything. I feel like I have that energy again, for the most part. Clearly, my legs are no issue, which is fabulous because I play soccer in the summer. After I did the treatment, I was able to play soccer again. Better than I had the previous two or three years.”

Lee’s next round of treatment – the three-day session – is currently set for the beginning of May.

In the meantime, Lee has to do regular bloodwork to ensure that any potential side effects – which include side effects common to infusion treatments such as rash, headache and nausea, and other effects such as back pain, infections and bruising – don’t pop up.

“Other than the blood work, I could go five, 10 years without having any MS-related symptoms, and that would be amazing,” she says. “If I get five years, I’m going to be happy. If I get more, then that’s amazing.”

One thing that is evident with Lee’s progress is the house that she and her partner, Joe, have bought for them and their two girls.

“Joe and I were looking for a house and – more me than we – thought that we wouldn’t be able to get anything bigger than a bungalow because of my issues with the stairs. Last year, we bought (a) house which is about a storey and a half,” she says. “It’s a big difference from what we were looking at before. I don’t have any issues going up and down the stairs.”

While Lee’s MS symptoms remain in remission, she is making the most of life by doing as much as she can with her family.

“Our schedules are all over the place right now. Like over March Break, we took them swimming, we went to Joey’s World (in Bowmanville). In the summer…we take them up north. My parents have a trailer up north, so we’ll go there. We’ll probably go camping this year,” she says. “We’ll do a whole bunch of day trips and stuff like that, so we’re doing lots with the kids.”

The road ahead

Lee, who now works as a community support worker in Oshawa, says that looking back, there weren’t as many services for those newly diagnosed with MS and would like to see more.

“They do have some support through the MS Society, but I went to one of them with a friend of mine that got diagnosed. But it was older ladies, which is no big deal, but they had had MS for a long time and had been dealing with it for a long time,” she says, adding she would like to start a program for those that are newly diagnosed, or have the MS Society do the same. “It’s nice to go and talk with people who have had the disease for a while and how they’re coping, but when you’re freshly diagnosed with MS, you don’t want to talk with someone about how their life is or how they’re coping. You want to find your own way to cope with it.”

After being diagnosed with the disease at 20, Lee says more young people should get themselves checked if they think something might be wrong, adding that having services available for younger people with the ailment would have made things easier.

“People are getting diagnosed younger now than before, so having something more geared toward the younger population, I think that would be helpful,” she says. “If something like that was around when I first got diagnosed, I would’ve talked to someone. Instead, I just shut it out. I didn’t talk about it or look anything up about MS. It was just in the back of my brain and I didn’t bother with it.”

However, since the Lemtrada treatment, Lee says that her life is on track and that it has made herself who she is once again.

“How I like to put it, it brought me back to me. Yeah, I was here and living in this body, but it wasn’t me,” she says. “It wasn’t the old me that used to be able to play with the kids and run around and do all that fun stuff and not be tired all the time. Now I have that energy. I can run around with the kids. I have a lot more options than I did a year ago.”