Chris' MS History
Chris was first diagnosed with relapse- remitting multiple sclerosis in February 2007. There are four kinds of MS: relapse-remitting, primary-progressive, secondary-progressive and progressive-relapsing.Relapse-remitting means that you have a series of relapses when symptoms get worse and remission when symptoms improve.
At the time of diagnosis, most people have relapse-remitting. However, more than half will eventually develop secondary-progressive. Secondary progressive is when you have relapses, but you stop having periods of remission and experience a slow but steady worsening of symptoms.
As early as January 2005, Chris had gone to the doctor on multiple occasions due to weakness and numbness in his arm and legs. Finally, in December 2006, he was evaluated by a neurologist when the entire left side of his body went numb, including his face that appeared to be drooping on the one side. She sent him to get an MRI and it came back with multiple lesions on his brain, the main indicator for multiple sclerosis.
Chris started taking a drug called Rebif that required injections 3 times a week. The drug is not a cure, but it reduces the number of relapses and slows down the progression of the disease. When Chris had a relapses they would prescribe him high-dose steroids. At first, the combinations of the Rebif and steroids seemed to be very effective.
From April 2007 to September 2009, Chris had 3 relapses affecting primarily his left side of his body in his leg, arm and face. We also noticed a slight decline in his balance and memory.
However, in September 2009, while Chris was working for three weeks in Nunavut, he had a relapse that affected his vision and balance. In February 2010, he had a major relapse that affected his leg and made it difficult for him to walk even short distances. When he took steroids, it took over 2 weeks for him to walk normally again. Prior to this, Chris would notice a major improvement within 48 hours. A month later, Chris had another relapse that affected his left leg. It was so bad at some points that he needed help getting from the car to the front door. This time it took almost a month before Chris started to
feel any big improvements.
We also noticed over the winter that Chris was never getting back to 100 per cent. Even after a relapse, Chris could no longer run nor skate and his memory and balance were continuing to get worse. When we met with his neurologist, she confirmed what we feared. Chris was no longer responding to his medication and he had started to develop secondary-progressive MS. We were told that unless he took action, Chris may lose his ability to walk without an aid.
He had two options:
Option 1: A new drug called Tysabri. It had shown to be really effective at reducing relapses in MS patients, but you risked
contracting a brain infection called PML (for which there is no cure and results in death). The risk for this infection increases the longer you are on it, so Chris would only be able to take if for two years.
Option 2: The stem cell transplant, which also had a risk of death and serious complications. The procedure could also take up to a year to recover from and the idea of chemotherapy was not pleasant. The obvious benefit was that if it was effective, Chris would never need medication again and he could possibly see improvement in his symptoms.
It wasn't exactly an easy decision. We were referred by Chris' current doctor to a hematologist, who explained the entire procedure for us. We did a TON of research. We searched the Internet and journal articles for everything there was written. We even read patients' blogs (one of the main reason why we are writing this blog) to understand why they decided to pick a certain treatment.
I even went so far as to make a chart with the pros and cons of all the options we could find. In the end, the stem cell transplant, despite it being the most dangerous, was the only option that gave us an end. If this could really stop the progression as it had in other patients, then it would mean an end to medication, an end to the relapses and an end to
Since the stem cell transplant is an experimental treatment, Chris still needed to be accepted. Luckily in June, after we met with another neurologist that specialized in treating MS patients, he determined that Chris was an ideal candidate.
And that brings us to the beginning of this blog.