I fear I am a disappointment to my neurologist. Actually, it’s a little exaggerated to call him “my” neurologist, considering I’ve met him only once, but it seems that he’s the guy overseeing my MS treatment these days. I went down to Umeå at the end of October for a check-up, and most of the meeting was spent discussing Mabthera, a treatment he strongly suggested that I start. Mabthera is a chemotherapy drug that apparently shows some promising results for MS patients. From the first mention of it, I didn’t think it sounded like it was something I was interested in, but I agreed to have a new MRI and to discuss the treatment if the results were any worse at all than my previous MRI three-and-a-half years earlier.
I had the MRI two weeks later, and about month after that I got a short note in the mail from the neurologist saying that the results were slightly worse. There was one additional lesion in my brain, and an existing one had gotten somewhat larger. So, it was worse, but not that much worse. Even so, he wrote, there was a certain amount of support for my starting the Mabthera course and I should set up a telephone consultation to talk it over.
I wrote back to him saying thanks, but no thanks. After I spent a long time considering it, I decided that it just felt like too drastic a step at this point. The literature I’d gotten from the doctor seemed to gloss over the possible risks and side effects, and the treatment itself feels like way too much. Aside from a course of steroids now and then, I’ve been off treatment for twelve years, and I feel pretty good. I’m certainly much, much better than I ever was when I was on treatment.
A couple of weeks later, I got back an even shorter note from the doctor reiterating his request for a telephone consultation. I sat on the idea for another few days, then made an appointment to talk to him. We had our conversation last Wednesday, a discussion that was basically a twenty-minute hard sell from him. Finally my repeated, “no, no, a thousand times no” seemed to get through to him, and he conceded defeat. We decided that I’d have another MRI next fall, which I have no problem at all with, and that I’d continue with the high-dose Vitamin D supplements he prescribed for me when I saw him in October.
It’s hard not to worry and second-guess myself, but my gut instinct is that I made the right decision. In any case, it’s not like I couldn’t start up some time in the future if I changed my mind or if, knock on wood, my condition got worse enough that I felt a drastic move was warranted. For the moment, though, fish oil and a couple of other supplements are doing the trick for me, and I’m a big believer in not fixing what ain’t broke.