I was diagnosed with relapsing-remitting MS (RRMS) when I was 36, in the prime of my life and career as an athletic trainer. I tried all three disease-modifying therapies that were available at the time but unfortunately none were helpful to me. In 2003, I traveled to Northwestern University hospital in Chicago to enroll in a clinical trial. It was a bone marrow transplant study and even though the therapy had a high mortality rate, I was willing to take the risk to help better understand and treat MS; but I was not accepted.
That was probably the toughest day in all my now 17 years of battling the challenges MS presents; not just because I was not accepted into the trial, but because it was the first time I was told I had primary-progressive MS (PPMS) — I now know that I had PPMS from the start, but because it manifested so slowly, no doctor was able to "label" me with it right away. Hearing I have a form of MS that is chronically progressive and has no therapies felt like being told to “go home and make the best of it” because they had nothing to offer me.