The Canadian MS Bone Marrow Transplant Research Study is a MS Society-funded project to re-grow the immune systems of patients with MS using stem cells. Led by Drs. Mark Freedman and Harold Atkins at the Ottawa Hospital Research Institute and University of Ottawa, the study began in August of 2000. Ten years later, more than half of the 26 patients enrolled have seen their symptoms stabilize and, in many cases, actually improve, unheard of results in the treatment of MS. Yet few people know about this research. As part of our month-long salute to MS and stem cells, we will speak with people involved in every aspect of this study: the doctors and researchers, patients and their families and the people behind the scenes. Today, an article by Jennifer Molson, a patient in the study.
I was 21 when I was diagnosed with MS. It was 1996, and I was healthy – running two km everyday, working full time, taking college courses and volunteering two days a week with the Ottawa Police Youth Program. I wanted to become a police officer. And, like any girl, I dreamed of walking down the aisle on my wedding day and dancing with my dad and husband.
Then I started to notice tingling and numbness in my arms and hands. I started to feel tired, too tired to run most days, and, when I worked out at the gym, I found the heat exhausting.
My family doctor thought the numbness was due to carpal tunnel syndrome in my wrist and the tiredness a result of working too much and staying out too late. I slowed down a bit, but the symptoms remained. Soon after, I had a lumbar puncture and a MRI scan. The diagnosis: Relapsing/Remitting MS.
Pretty quickly, I was transferred to the MS Clinic at the Ottawa General Hospital run by Dr. Mark Freedman. Over the next six years, I had multiple relapses: I lost function in my arm, experienced numbness in my legs and went through periods of extreme dizziness and nausea. I never knew how or when my MS would strike, and after each relapse I was left with more disability. I realised that becoming a police officer was not in my future.
The summer of 2000 was great, but by September I began to notice a lot of new symptoms and, by the beginning of 2001, I could no longer work. I was barely able to stand, had no sensation from mid-chest to my toes and was constantly nauseous. An MRI scan showed lesions on my brain stem. My diagnosis was changed to Secondary Progressive MS.
That year, Dr. Freedman told me about a new stem cell transplant study for patients with MS. They would destroy my immune system using chemotherapy and then use stem cells from my own bone marrow to essentially grow a new immune system. Their goal was to stop the progression of the disease, not to fix damage that had already been done. The best I was hoping for at that point was to not get any worse.
So, even though the procedure was experimental and involved risks, including seizures, sterility, and even death, my decision was easy. I had tried everything else, so I had no fear. My boyfriend (now husband), however, was terrified, but supported my decision. You know it’s pretty bad when death is a viable option and what you’re doing to help could actually kill you in the process.
After months of tests, surgery, stem cell recovery, chemo treatments and injections I was ready to begin the transplant stage on July 4th, 2002. I had my stem cells harvested, and over the next three weeks they were transplanted into me.
The first six to eight months after the transplant are a blur and involved overwhelming tiredness and lots of medical appointments. My life was scheduled day by day from February of 2002 until the time I was done. Even now, I still have to go for tests and follow-ups, but it’s a longer leash.
When I look back it was probably about two years before I really started to feel better. And it was sometimes so gradual that I didn’t realize I was getting better. One day I realised I had walked to my mailbox and back without a cane. Soon after, I walked into Dr. Freedman’s office and he looked down and said, “Jen, you’re wearing high heels!” For someone who had been wheelchair-bound a couple of years earlier, this was a remarkable thing.
I approach my eighth year post-transplant mark this July. I’m no longer taking any medication. I returned to work full-time, passed my driving test, am completely independent, inside my home and out. I’ve even gone downhill skiing. I was married seven years ago and, yes, I did dance at my wedding.
I still have MS, but I don’t. For many people with this disease, your whole life is spent coping with getting worse. For me, I’m fortunate to be coping with getting better.
Jennifer Molson was patient number six in the Canadian MS Bone Marrow Transplant Research Study. She is also a True Blood expert.