A chance meeting with a man in a wheelchair led Brooke Robinson to a clinical trial that was using stem cells to treat multiple sclerosis: ‘He saved my life.’
by Emma Jones | Healthing February 2, 2022
Brooke Robinson was walking down a busy Toronto street one day when a man on a scooter stopped her and asked why she was using a cane. When she told him it was because of multiple sclerosis, he connected her to a clinical trial that would completely change her life.
Multiple sclerosis (MS) is an autoimmune disorder where the immune system attacks the central nervous system (CNS). Symptoms may vary based on where the CNS is damaged. While it is considered a chronic condition, individuals may experience episodes of illness, followed by periods of relief.
Canada has one of the highest rates of MS in the world, with one in 400 Canadians diagnosed with MS, compared to a global rate of one in 3,000. Studies have indicated that the prevalence of MS is greater the farther the community is from the equator, which is thought to be related to less exposure to the sun the closer one lives to the poles, resulting in the body producing less vitamin D. There are more than 90,000 Canadians currently living with MS.
Robinson sat down with Healthing to talk about her experience being diagnosed with MS, why it’s so easy to feel alone and an exciting stem cell trial that has the potential to change everything.
This interview has been edited for length and clarity.
What led to your diagnosis with MS?
I was diagnosed with MS in April of 2015. Essentially what happens with multiple sclerosis is, at some point in your life, your immune system learns that your central nervous system is a germ so it attacks it. They don’t really know what the cause is [but] they do know that it’s really heavily influenced by your environment. So, people who live in colder climates and have less exposure to vitamin D — that’s where the concentration of people with MS is.
Because of the way it manifests in your body, they call it a ‘snowflake disease.’ When your immune system attacks your central nervous system, it causes scarring on the myelin tissue that surrounds your central nerve and that scarring causes an electrical short for your brain (your neural pathways.) Depending on where that scarring is, [it affects] what your symptoms are. That’s why it’s called a snowflake disease: different people will experience vastly different symptoms. And so it tends to take a really long time to diagnose.
Most of my scarring started out on my lower and mid-spine which translated to bowel and bladder inconsistency. At times I had some bladder urgency, I had constipation, or I had some incontinence and it was misdiagnosed. I think I was 25 or 26 years old when they diagnosed me with irritable bowel syndrome; it was quite strange — I’m not a doctor, but I’m like, my bowel and bladder are not connected. [I wasn’t sure] why they said it was IBS.
Outside of the fact that it is your immune system attacking your central nervous system, the other part that causes difficulty in diagnosis is that 80 per cent of people with MS have what’s called relapse-remitting, and so they’ll experience what we call a ’bout,’ or a ‘relapse,’ and then they go into remission. So 80 per cent of people with MS will have a relapse, or there are drugs that will speed up the relapse and help recovery faster, and then there are drugs that prolong remissions. [Because of these] disease-modifying drugs people with MS can have years in between having their next relapse. Most people can live until they’re 50 or 60 before they actually start experiencing permanent disability.
For me, as I talk to more patients that have multiple sclerosis and obviously my doctors in Ottawa and Toronto, it’s becoming more apparent that I likely was experiencing symptoms much younger. Recently, researchers have found that the Epstein Barr Virus has a really high correlation to patients with MS. I had mono when I was 16, which is which is primarily caused by the Epstein Barr Virus, and then I had a few other situations when I was younger that could potentially have been an autoimmune disease.
Yeah, it’s been almost 20 years of the disease because I wasn’t diagnosed until I was 30, in 2015.
What led to the MS diagnosis?
When I started going down the path of an autoimmune or neurological disorder, it was in December, 2014; I now know I was experiencing a massive relapse. I had, essentially, some incontinence of the bowel a few times within a week. Finally, my left eye, from what I now know is called optic neuritis, went blind for about 10 days or so.
Those two symptoms alone, basically, forced urgency on the doctors. So, my GP then recommended me to go direct to emergency where it is faster to get an MRI. I immediately saw the emergency doctor and she basically just tapped on my knee to check my reflexes and I pretty much kicked her in the face. She almost immediately said that it was probably neurological. And then me being me, I was like, so can you fix it? And she basically said, I don’t think so. But it is it is manageable.
So I went home and researched autoimmune and neurological disorders and I found multiple sclerosis. I knew nothing really about it [but] basically, I checked all the boxes.
So you kind of knew before you got the formal diagnosis it was likely MS?
Exactly. I would say within 24 hours of seeing that emergency doctor I knew and she immediately referred me to a neurologist on site. I had a follow up within a couple of weeks and the neurologist just ordered a slew of tests, because with MS the way that they reach a diagnosis is by essentially eliminating everything else. There isn’t one test that will tell you that you have MS.
The first one they usually do is all the blood tests to rule out things like Lyme disease, and then they’ll do a spinal tap to check the history of inflammation in your spinal fluid. And then they’ll do an MRI.
What was having a spinal tap like?
Well, they don’t tell you, but essentially, they roll you over and stick a massive needle in your spine that sucks out a little bit of spinal fluid. Silly me, I decided to go back to work [afterwards] since I felt fine because the anesthetic had worked. The doctors did tell me that if I got a headache, I should lay down or have a cup of coffee because that seems to help, I guess. I did have a cup of coffee, went back to work and then the headache took hold and it was debilitating. You can’t do anything but lay down. So I got in an Uber and went home.
So you’re 30 and you find out you have this very real diagnosis.
The problem for me is that with MS you slowly lose your ability to do things and I was a really healthy person. I was going to the gym, I played sports.
I would have perhaps made a stronger correlation [between my symptoms and the disease], but it took a long time. The loss of my gait, for example, wasn’t noticeable, but by the time I was diagnosed in April of 2015, I was rapidly declining from a disability standpoint. By October, I needed a cane.
The way MS disability is measured is through the EDSS, the expanded disability scale . Essentially, a six is someone who needs a walking aid to get anywhere and seven is someone who needs to be in a wheelchair permanently. Eight is bedridden and nine you’re no longer functioning. So by October of 2015, I was a 6.5 on the EDSS.
So you just find out about the diagnosis and a couple months later, things are really changing on you. How did you cope?
There’s some comfort in a diagnosis because now you have certainty and you can figure out what your plan is to deal with it. That’s your life. But we [had just bought] a new house in Toronto, so to get up the stairs to go to the bathroom, my husband would have to lift my leg. We were thinking we were so lucky to have a house in Toronto when the market was crazy, but at the same time, we were faced with the reality that we’d have to sell the house and live in a condo or rent a single floor home. That was terrifying.
[I also didn’t know] how much longer I was going to be able to go in the office, as someone who needs a cane. The city is not very accessible; it’s extremely difficult to get around. There are very few bathrooms on public transit, the subway is difficult — it can take you an hour to get to your destination on any of the main lines and then just being able to get through an entire day of work can be really exhausting. That’s another massive symptom of people with MS: they get fatigued quite easily. It was like, Okay, what are we going to have to do about our housing?What are we going to have to do about my job and my career? Just a year prior, I was a perfectly healthy human being just starting to build my career. It was terrifying.
What are the treatments for MS?
For MS, doctors essentially treat the symptoms. There are drugs that will speed up a relapse, things like steroids, that will push you into recovery sooner. Then there are drugs that prolong remission. So, depending on how intense or aggressive your disease is, you may be put on a disease-modifying drug.
Disease-modifying drugs are extremely expensive: in the realm of $60,000 a year. A lot of companies don’t actually cover that, but I was lucky enough to work at a place where we had a special discount with Costco and I had 100 per cent coverage of all my medications. Although, I did have to get special permission and fill out a ton of different forms to get the insurance company to approve the [coverage as] a necessity.
I had that drug, and another one that helped with my walking, and one that helped with my bladder urgency. The three drugs combined were about $80,000 a year.
And that’s not covered by OHIP?
No, you need private insurance. There are some foundations and companies that will help, like Trillium Foundation helps to cover some of the costs for people who can’t afford it. So there’s that, along with being disabled, and trying to figure out your career — your world turns upside down.
Especially since you need your drug plan to be able to afford all these medications.
Exactly. Yeah, it is very stressful. Funny enough, autoimmune diseases are largely impacted by stress. You’re damned if you do, you’re damned if you don’t, right? It’s quite a predicament.
How did your family react to your diagnosis?
[My husband] Dave is an amazing human being. He was just like , let’s do this. We can get through this. I mean, there were signs that something was seriously wrong with me and he was still around. We hadn’t gotten engaged yet, but we had discussions around that. And shortly after the diagnosis, he proposed, and a year later, we got married. It’s a really beautiful story, because in addition to the career and living circumstances and the cost of medications, the financial impact, it does tear apart a lot of relationships. There are a lot of people who have critical illnesses, like MS, whose partners walk out on them. I was extremely fortunate that [he’s] stuck around.
You joined a clinical trial that changed everything for you. How did that happen?
A year after my diagnosis, I was walking down the [street] — Dave [my husband] and I were were meeting up to have dinner. A gentleman in a scooter stopped me, pointed at my cane and said, Is that permanent? And I thought that it was kind of weird because most people think I just had hip surgery or something. I said, Yeah, I have multiple sclerosis , and he was like, Me too. It was a really weird encounter, but it turned out to be awesome.
He told me about a clinical trial that was happening in Ottawa, Ontario — he had tried to get into it, but he didn’t qualify. So I got in touch with the people running the trial.
What the clinical trial did was essentially cultivate brand new baby stem cells. The doctors pump you with Neupogen [a medication that promotes the development of stem cells in the bone marrow] for two weeks, extract those baby stem cells through a centrifuge machine, and then take those stem cells away and clean them up. Two months later, your entire immune system is wiped out with 10 consecutive days of chemotherapy and on the last day, they give you back your baby stem cells.
It has been done for, I think, about 20 years now, maybe, 22. I was patient 41. I met [the man] in April of 2016, and by that October, I was in the trial having my stem cells harvested. In December, I did the chemo, got my stem cells back, and two weeks after that, I have never needed my cane again. I’m now a 2.5 on the EDSS.
[The man who told me about the trial is a] glorious man. I kept in touch with him for a few years. I recently tried to reach out to him because this was my five-year disease-free anniversary, and I couldn’t track him down. He did, for all intents and purposes, save my life.
What was intensive chemo like?
The chemo is rough. It tore me down, but from what I went through with MS and all of the symptoms, and the stress and the challenges, you look ahead and think, this is going to be the difference.I’m either going to stop the progression of the disease, or I’m going to be lucky enough to reverse the progression of my disease.
Were you in the hospital the whole time?
We had to quarantine in Ottawa for three months, so we left our home in Toronto and moved into an Airbnb. We got a two-bedroom place so my parents could come up and help. When I had the chemo, for the first four days, I could go back to the Airbnb each day, but for the last five days, I had to stay in the hospital because they catheterize MS patients. The particular type of chemo that is used can’t stay in your body, so you have to drain your urine every hour to get rid of it.
Oh, also, fun story. There’s a lot of stuff that MS patients can’t have, like, you can’t have raspberries because you can’t guarantee that all the little crevices [are clean]. You can’t have steak that isn’t really well done, or sushi — anything that could potentially have disease because you basically have no immune system. So — and you can say this because it’s legal now — in early 2017, in Ottawa, all the pot shops were popping up everywhere. We would go to this one pot store near us and get these little pot brownies — it helped with the boredom, but it also helped me eat. After such intense chemo, you actually lose your taste buds and your appetite — the brownies really helped me get back into eating.
You said that it was about two weeks after the transplant that you noticed you didn’t need your cane anymore. What about the other symptoms?
Walking was the thing that most quickly recovered. I think that’s primarily because it’s mind over matter — you just keep trying and you walk more every day. You build back the muscles that atrophied with MS.
The bowel and bladder issues took longer. The doctors have noted that after about three years, you start to stabilize and that’s as much as you’re going to see in terms of a reversal of your symptoms. But I would say I’m getting better still, as far as the gastrointestinal issues, but they don’t really know exactly why.
Every year in November, I have an MRI, which is matched to the previous year’s MRI to see if any new lesions have developed — basically, whether or not you’re disease-free. This year, I was five years disease-free. But in 2020, the scans showed that some of the pre-treatment lesions had actually shrunk. The doctors say that that tends to happen only up until the three-year mark, but at the four-year mark my lesions had noticeably shrunk. Who knows what the next year will bring? I would say I’m still getting better and stronger.
Are you back to like your pre-diagnosis lifestyle?
[I’m a 2.5 on the EDSS scale], so I have some disability: my gait is not great. One of my symptoms was vertigo and though I still have it, it’s nothing compared to what it was. And I still have balance issues — I can’t really ride a bike. I know I can’t roller skate — I did try a couple times including this summer. Potentially I could skate again with a hockey stick holding me up, I don’t know. But I think it is more the skills that I would have to try and build back up. Swimming would be better — we bought a rowing machine for the basement. It’s just different activities now.
What made you want to share your story?
First of all, the gentleman who stopped me on the street. Also, my doctors in Ottawa would like me to help educate the doctors in Toronto so they will refer more patients to the treatment. After all, unless they run into a random guy on the side of the street, they may not ever be aware of this [trial].
There are options out there to help you and sometimes your doctors might not know about them. Even my MS neurologist wasn’t going to recommend me for the trial [because she didn’t think I was going to qualify] — I had to reach out to the doctors directly.
People with multiple sclerosis often have very embarrassing, humiliating experiences. Even for me, having bowel and bladder issues is…people don’t understand that, right? The fact that it’s terrifying for me to take a subway that’s going to be longer than 20 minutes because I can’t get to a bathroom. There’s also the cost of that — I have to take an Uber or the GO train. It’s the things you have to think about that people — unless they’ve been through it — can’t relate to.
There are now 90,000 people in Canada that are diagnosed with MS, but if you think about the fact that I probably started experiencing symptoms when I was 16, that’s a really long time for someone to go through bouts where they don’t understand what’s happening to them. And then to go to a doctor who doesn’t understand, or they misdiagnose you, or give you the wrong medication or treatment plan.
I tell my story because it helps. It helps people who are suffering from MS to know that there are other people out there who are experiencing the same sort of debilitating symptoms and humiliation.
And so now that you’ve gone through all of this, what brings you joy?
I love anything artistic. I love to paint. I love music — that was a big one for me because when I got married in 2016, I had my cane, and I didn’t really get to dance and have fun the way that I would have had I not been disabled. In 2021, we were planning on having a dance party, but then obviously we were stuck in lockdown. So we have to wait, but that’s the thing. It’s just slowing down and enjoying more of life, taking a minute to be creative and to enjoy dancing.