Drug trial, that is! Back in the early 2000’s, my neurologist in Ottawa, offered me the chance to use a new oral medication for my relapsing remitting multiple sclerosis. I had just expressed my skepticism for ALL of the ABCR* medications, the traditional injectable treatments that were available at that point. She smiled and asked if I wanted to try something new, in the form of a PILL! I readily agreed to this, especially since I wasn’t a fan of being a perpetual pincushion.
BUT…… At this point, it is only available through a drug trial. Not a problem, I assured her. I’m game for anything that might eventually help find a cure for this beast. Being the fifth member of my immediate family to be diagnosed with MS, I was keen to do whatever I could do to enhance research. I’d like to see this disease annihilated before my kids or grandchildren are forced to potentially face it!
So, after all the paperwork, I was sent to a local hospital for my dose, while being closely monitored by medical personnel. Since I didn’t blow up, or grow an extra ear, they sent me on my way. It didn’t affect me at all, at least not immediately. Of course, I could have been given a placebo (aka sugar pill). The next day, I was mildly nauseous, all day long, but that was all. When the malaise continued for several days, I decided that I was one of the lucky few got the real drug.
Eventually, the ill feelings dissipated, and life went on. A couple of years later, the trial was unblinded, and I was told that I was in fact on the actual medication. Yahoo. I was right all along. Not like the last trial I was on, where my placebo had me convinced that I was on Tysabri, only to discover that I wasn’t, when the drug was pulled off the market on the fear that it might cause PML, a deadly brain infection.
So, back to now. My last visit with Dr Goodin, when the trial ended, was indeed to be a final farewell. I didn’t wish to continue under his care, not due to any fault of his, but due to the awkward distance I had to travel for appointments! UCSF is in San Francisco, which is at least an hour and a half from where we live, in the south Bay area. I asked him for a referral to Stanford university’s new neurology unit, which is closer to half an hour’s drive. He was quite amenable to that, and even suggested I be referred to Dr Jeff Dunn, a new up-and-coming neurologist at that facility. Several members of my support group see him, so I’ve heard good things about him. Here’s hoping that my meeting with him will be as positive!
As we parted ways I asked Dr Goodin why I had never had an MRI of my spine. I have had dozens of MRI’s over my years with MS, but never of my spinal cord. I would be very interested in seeing what result might show if this part of my body was examined, as I have read that physical disabilities of the extremities more often can be shown as lesions on the cord than on the brain. He appeared taken aback, paused, and agreed that this should be looked at. He then suggested that I ask Dr Dunn about this, BEFORE an MRI is already booked.
As to why I am without medication at the moment, it has been attributed to paperwork, and its propensity for getting mislaid. I have been assured that a replacement batch will arrive on my doorstep momentarily. I just hope that my body doesn’t notice the lack of this chemical in my bloodstream while I’m waiting! It doesn’t help that the tension in my life is at an absolute peak right now, with us closing escrow on our new home in less than a week!
* Avonex, Betaseron, Copaxone, Rebif