Research is very important to finding a cure for all diseases. When I was diagnosed with Multiple Sclerosis, I was eager to participate in research programs. In the year of 2000, I was selected to be apart of and on the Tysabri study. This was a double blinded placebo study that would be a three-year commitment. I was fortunate enough that my primary doctor, William Stuart, and Dr. English lead the Tysabri program. When I began my first infusion in January of 2000 I was anxious, excited, and thrilled to possibly become stable with my Multiple Sclerosis. In the months prior to beginning this medication, I was in relapsing remitting MS, had multiple episodes and was steadily declining.
After about six months I told my husband I was feeling better, no episodes; such as optic neuritis or deficits in my walking. I said, “if I’m not on the medicine then my mind is playing a game on me.” The medication was taken off the market after around 3 years. This was because there were side affects of PML and a few patients had died.
I was disappointed and discouraged at that time as my sister was approved for her first dose when they pulled the medication. I was off the medication for about 12 months until it was approved once more to be a multiple sclerosis medication.
What was it like to be on a study? For me it was a monthly commitment of four hours. The infusion was one hour, then I had to wait one hour to make sure I had no side effects, and I would have testing such as motor skills, cognitive, and other related multiple sclerosis testing.
I am a big advocate for studies and if asked again I would definitely say yes. If anyone has any questions about being on a study please contact Terry Hord at Twins Coast To Coast.