In September 2010, Chris and Erin were married. In October, Chris started preparing for a hematopoietic stem cell transplant at the Ottawa General Hospital.
From their blog:
Chris was first diagnosed with relapse remitting multiple sclerosis in February 2007. ... As early as January 2005, Chris had gone to the doctor on multiple occassions due to weakness and numbness in his arm and legs. Finally he was evaluated by a neurologist in December 2006 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 prescibe him high-dose steroids. The combinations of the Rebif and steroids seemed to be very effective at first.
From April 2007 to September 2009, Chris had approximately 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 or 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....
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 medicatons, an end to the relapses and an end to the worrying.
Since the stem cell transplant is still 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....
Follow the entire and engaging patient/caregiver blog here:
http://my-end-to-ms.blogspot.com/
Good luck Chris and Erin! It'll be a challenging but worthwhile journey. And congrats on your recent marriage.
From their blog:
Chris was first diagnosed with relapse remitting multiple sclerosis in February 2007. ... As early as January 2005, Chris had gone to the doctor on multiple occassions due to weakness and numbness in his arm and legs. Finally he was evaluated by a neurologist in December 2006 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 prescibe him high-dose steroids. The combinations of the Rebif and steroids seemed to be very effective at first.
From April 2007 to September 2009, Chris had approximately 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 or 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....
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 medicatons, an end to the relapses and an end to the worrying.
Since the stem cell transplant is still 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....
Follow the entire and engaging patient/caregiver blog here:
http://my-end-to-ms.blogspot.com/
Good luck Chris and Erin! It'll be a challenging but worthwhile journey. And congrats on your recent marriage.
Comment