The disease’s name refers to scars, or scleroses, that form in the brain and spinal cord over time.
On the day that he told me I had MS, my neurologist said I didn’t need to begin treatment immediately. But at my next appointment, he asked if I was interested in participating in a clinical drug trial he was conducting. I said I’d like to know more about it, and the study nurse showed me the trial’s consent form. The possible side effects were frightening, and I opted not to participate.
I have a background in medical ethics, so I was familiar with the potential conflicts of interest that exist for physicians participating in clinical pharmaceutical trials. I asked my neurologist if he was being compensated for running the trial, and he confirmed that he was. It was the kind of situation I would have advised students in my ethics courses to think deeply about.
But with my own health in question, my naturally skeptical faculties were silenced. I’d recently received a diagnosis of a serious chronic disease, and I wanted to be privy to any new studies or information that came my doctor’s way. At that moment, any worries about potential conflict of interest were trumped by a sense that I was lucky to have a neurologist on the front lines of MS research.
About six months later, during a routine appointment, my neurologist told me that new lesions had shown up on my most recent MRI. He thought it was time to go on disease-modifying treatment. (There is no cure for MS, so doctors usually describe medications as “modifying” the disease’s effects.)
Among the few options we discussed was Copaxone, the MS medication that’s supposed to have the fewest systemic side effects. This is a drug that MS patients self-inject either daily or every other day into the fatty layer just below the skin in the arms, thighs, hips or lower stomach. I agreed to start using it.
Life on Copaxone
But life on Copaxone wasn’t easy. Typically the medication doesn’t cause fatigue, nausea or depression, as some other MS drugs do. But no matter where I injected the drug each day, the injection site swelled up into a huge welt and felt like a gigantic bee sting.
About a week after starting Copaxone, I got a call from a nurse at an organization called Shared Solutions, wanting to know how my injections were going. My neurologist had asked if he could give my patient information to Shared Solutions, and I had agreed, assuming it had something to do with my health insurance. The nurse was extremely helpful, and I spent nearly an hour talking with her. Soon I began to receive letters and packages from Shared Solutions, including refrigerator magnets, a box for carrying Copaxone syringes on a plane and invitations to MS education dinners.