One year ago, I had a massive MS Tysabri rebound attack that locked up my legs and put me in a wheelchair. By coincidence, the anniversary of my infirmity coincides with World MS Day on May 28th. It's an opportunity to increase awareness about a puzzling and often devastating disease. The website includes perspectives from people with MS who are not necessarily white middle-aged women, or even white middle-aged men, like me. Contrary to what doctors used to tell us, MS does not discriminate in regard to the ethnicity or sex of the lives it steals.
As I view the faces and the hopes of people scroll by on the MS World Day website, I realize MS steals life one year at a time. My life of adventure was put on indefinite hold. None of us can get lost time back. But if we're lucky, we might have an opportunity for more in the future. That second chance is what HSCT gave me.
Four months ago, I stumbled out of Northwestern Hospital Chicago with a new immune system that wasn't attacking my nerves anymore. My head was bald from chemo and my body probably the physically weakest it's been since infancy. But I was happy. Thanks to Dr. Burt's HSCT procedure, I'd just dodged a life of wheelchair-bound incontinence. Now I'm slowly getting better, but recovery has still been maddeningly slow. Walking a block or two takes tremendous effort. People look at me and know something is wrong. I just look at them, smile and say "Hey, I was in a wheelchair four months ago!"
Dr. Burt reminds me to be a patient patient. Though the last year was certainly the worst of the MS, my nerve damage has been accumulating since before 2007 when I was diagnosed at the age of 41. It's typical for improvement to continue for 3 or 4 years after HSCT. I'm looking forward to the improvement, but sometimes this feels like running the world's slowest marathon. Actually, not running. More like stumbling a few hundred feet, taking a a nap, and getting back up again.
Addendum: An astute reader of the MS World Day website will note sponsorships by MS drug companies, including Biogen Idec, the maker of Tysabri. Please forgive me if I have mixed feelings about the rhetoric of hope from drug companies. Over time, it felt like my drug-prescribing neurologist was dangling hope at the back of a trap.
When Tysasbri threatened to kill me with a deadly brain infection in the fall of 2012, Biogen offered to transition me to a free year of their then not-yet-FDA-approved oral MS drug, BG12. As noted earlier in this blog, delays in approval of BG12 set me up for an MS Tysabri rebound that put me in a wheelchair and itself almost killed me with attacks on my brainstem. When BG12 was finally approved to be marketed as Tecfidera, I took it hoping it would help, but it didn't. I stopped taking Tecfidera in December 2013 when I began HSCT treatment.
Five months later, Biogen finally noticed I wasn't taking their drug anymore. They called to see if I needed assistance. No thanks, Biogen, I don't need MS drugs anymore. If anything good came out of my year of Tysasbri rebound hell, finding HSCT and getting off MS drugs would be it.
