When were you diagnosed with multiple sclerosis?
What were your symptoms?
“Initially, my main symptoms were numbness in my right leg and both of my hands, and incredible fatigue. I also complained of what I know now to be Lhermitte’s sign. As time went on, my symptoms increased. Balance and gait issues crept up, my fatigue increased, heat intolerance became an issue, and I had bladder problems as well.”
What treatments did you try before HSCT?
“I was on Copaxone until 2010 and then switched to Tysabri. I also had some IVIG infusions after my son was born in 2008 as well to try to ward off a postpartum flare and allow me to breastfeed as long as possible (back then there weren’t any known safe DMDs you could take).”>
“I first went to meet Dr. Burt and was randomly placed in the control arm of the study. It was devastating. But, I know how clinical trials work and I understood why having a control arm is so important. Thankfully, Dr. Burt had made his study one where a cross-over could happen. Basically, if a control arm patient has a sustained progression (shown on their EDSS score) for more than six months, you crossover to the treatment arm. While on control, I switched to Tysabri. It was clear that Copaxone wasn’t the answer for me. Tysabri was the best of the best as far as medication was concerned. It took almost two years, but I continued to show a worsening EDSS, and in June 2012 I had HSCT.
“I started running again a couple summers ago, and was able to work up to a half marathon distance, which I’ve now completed several of. I have always thought that the Gold Nugget Triathlon looked like such an incredible event, all those women cheering each other on. Even with all the improvements I’ve had since HSCT, my balance is still not up to being able to ride a bicycle. On a whim this spring, I emailed the board of directors for GNT and asked if I got in to the race this year, would they allow me to use a tricycle. They immediately said yes, and I guess you could say the rest is history. I started swimming laps again and began online shopping for a recumbent trike.”
How do you feel now that you are a triathlete?
“It was an incredible day. I don’t think I’ve ever been so nervous before a race in my entire life. I always run, but this was outside of my wheelhouse. My significant “wildcard” is that I don’t always know what to expect from my body. I really only wanted to finish, to just be able to say that I did it! Now I am already thinking about doing it again next year and being even faster.”
“I still have some balance issues, but all in all my symptoms have improved since HSCT. I no longer use my cane, and my bladder issues and Lhermitte’s have resolved. When I exercise or get overheated my right leg will go numb now, but once I cool off it calms back down. What I notice the most are the little things, like taking a shower without having to sit down. Or being able to put my socks on my feet while standing.”
What is next?
“I travel back to Chicago this month for my 5th HSCT “birthday” evaluation, which will be my final one with Dr. Burt. I schedule my appointments around the Cubs home games. We hope to see that W fly while we’re there (my now 8 year old son has become a huge Cubs fan through all of this). I plan to run a few more races this summer, and I really want to do another triathlon. Now we are simply enjoying our Alaska summer!”