I’d started this blog while I was taking monthly trips to the NIH (National Institutes of Health) for an experimental MS (multiple sclerosis) medication, which would be released in May of 2016 under the name Zinbryta. I’d expected this drug would change the lives of hundreds, if not thousands, of people like me who had had no luck with prior FDA approved drugs. Instead, a black box warning scared people away, and ultimately the drug was pulled from the market in March of 2018. Instead of being a blog about this drug, I guess it’s just a blog about me.
Before I started taking an earlier form of this drug in 2006, my MS was very aggressive, and resistant to all FDA approved medications then available. Because my disease was too dangerous to not treat, I took an off-label risk on a treatment to keep the immune system from rejecting organ transplants. My other alternative, I kid you not, was bone marrow transplant. In 2010, I learned that all the supplies of the drug were being hoarded by the NIH. With further investigation, I learned that the chief investigator of the study was the same neurologist I’d coaxed into prescribing me the drug off-label four years previously. Happily, she invited me to visit the NIH (free of charge) to see if I would qualify to participate in the trial. The rest is history. I’ve been involved in clinical trials of potential MS drugs (and MS diets) ever since.
I live a full and meaningful life with MS. I teach writing to undergraduates at The Art Academy of Cincinnati, and lead writing workshops both in my community and in The Kenwood Senior Center. My students are a source of constant inspiration, as are my family and my friends with (and without) MS.
My advice to anyone diagnosed with MS, or any other scary sounding disease: don’t give up. Don’t give in to fear. Don’t accept negativity. Keep asking questions. If you don’t like the answers, keep looking for someone smarter to ask. Above all, keep moving. I wish you good health!