Today saw the first time, since I was diagnosed with multiple sclerosis, that I had the chance to discuss my condition with specialists on the condition. After being told that I had MS back in January 2006, I walked out of my neurologist’s office, went home, and heard nothing for over a year. This despite being told that I would be contacted by a MS specialist nurse to discuss treatment options, and that I would be scheduled for follow-up exams. Some one dropped the ball on that one.
Of course, I was in no hurry to go looking for more medical treatment; I was just getting on with life, and work, without any significant disability. I described my symptoms as “annoying”, and no real problem to live with. After my business/vacation trip to the USA in March, however, I was hit by a combination of symptoms that left me feeling I’d aged fifty years while coming down with the flu. I bounced back after about ten days, most of it working from home. It looked suspiciously like a MS relapse, thus confirming the diagnosis, so I called up the hospital, who scheduled me for the MS Review clinic I had heard about.
The first order of business today was to confirm that what happened last month; was it a MS relapse or not? The consensus was that it was; the fatigue and loss of motor control were classic signs. The way I’d recovered so quickly was odd to me, but not to the specialists, who were quite used to it.
The hospital I go to, St. Vincent’s in South Dublin, is affiliated with the nearby University College Dublin, where they are doing research into MS, so you can probably guess what happened next: they wanted my blood, and a lot of it. Ten 5ml vials in total, going to various places, for various forms of analysis; the usual general health screens, plus some extra tests, including DNA sequencing.
So I’m back on the track regarding MS treatment, and I have some options for treatment. At the time of my initial diagnosis, my neurologist and I agreed that I did not need to start any treatment at that time. Now that I’ve had a relapse, the picture is different, and it’s time to start thinking about future relapses, and how drugs can reduce their frequency and ameliorate their severity. (Do I get bonus points for finding a use for the ten-dollar word ameliorate?)
The most interesting treatment option, by far, is an invitation to join the Phase III double-blind trial of an upcoming MS therapy called FTY720. Some details about the drug and its current status can be found at the following link. This is the last phase of trials, designed to generate the data that the manufacturer needs before they can submit the drug for approval.
The “unique selling point” for this drug is that it’s the first made-for-MS treatment that comes in capsule form, to be taken orally; all the other current therapies are administered by injection. That would not be a show-stopper for me, I suppose, but their efficacy in reducing the incidence of relapses – about 30% – means that I’d think carefully before accepting such a treatment regime. I’d have to start one of those straight away, and it would take years of injections before anyone could say whether it’s doing me any good.
So, I think I will volunteer for the FTY720 trial. Not only do I have an interest in furthering research and helping it to market; I have the luxury of a mild MS condition that means I can experiment with treatments. The double-blind nature of the trial means that I could conceivably be given a placebo, and effectively have no treatment for the two-year duration of the trial. I can afford to take that risk.