Last week, following the wonderful mini-vacation and science conference that we enjoyed, I had a follow-up appointment with the MS specialist. This follow-up comes on the heels of having seen an neuro-opthomologist (which frankly was kind of a waste of time) and a neurosurgeon (the pineal cyst is not big enough to require surgery or be a source of concern), and following several blood tests (with tests for NMO and sticky-blood syndrome, along with the usual MS blood panel, all of which tested negative).
During this appointment, Dr. H. seemed to me to be a little off her game, or maybe I was expecting more from her than was fair. Or, maybe my bringing along my SO for this appointment (he didn’t come with me on the first visit) resulted in an unintended intimidation factor. Not once, for example, did she open up my MRI files and walk me through what she saw, and what her “take” on the images was (in contrast, my primary neurologist Dr. K. gave me a thorough “brain tour” with my MRIs). In fact, it wasn’t completely obvious that Dr. H. had actually examined my MRI files … or, if she had, she didn’t seem as familiar with them as I would have expected. She didn’t comment, for example, on any changes (or lack thereof) between the 3 different eras of MRIs (one taken in 1997, the other in 2006, and the last one in 2012).
In any case, after some discussion, Dr. H. said that she stood by Dr. K.’s initial diagnosis, and that I have “possible MS”, but to please continue taking Copaxone. Hmm. The word “possible” is the real kicker, isn’t it? Have I learned any more from Dr. H. than I knew before I first saw her? Haven’t I known all along that I had possible MS, and that the intent of these tests is to make a more definitive diagnosis, one way or the other? Perhaps I am being unfair to the medical profession, perhaps we just don’t know “enough” yet about MS to definitely rule it in or rule it out. Is “possible MS” enough of a reason to continue the painful Copaxone treatment? I was just hoping, perhaps unrealistically, that Dr. H. would be able to get me out of this gray zone and make things more black and white.
She must have noted the wheels whirring in my brain during our discussion, because she then suggested that a spinal tap (lumbar puncture) might help with the diagnosis, and asked if I’d be interested in proceeding along that path. As much as I fear this procedure, and despite my noting her lack of enthusiasm in suggesting it, I feel compelled to proceed with it. Otherwise, I may always wonder about what the result might have been. So … sometime in the near future, I’ll be writing about that fun experience.
I guess the lesson that I always need to remind myself of is this: physicians — even specialists or researchers in the field — are human, and they don’t have all the answers. They have their own families, their own lives outside of the office, just like the rest of us. They don’t live and breathe every moment during work and after office hours just to solve our personal mystery ailments. At the end of the day, we must look to ourselves when searching for the strongest advocate; we are the ones who know our bodies best, and we alone must make the final decision regarding (1) how far we are willing to go to pursue answers, (2) when we deem the answers that we receive to be satisfactory, and (3) what we consider to be an acceptable balance between treatment options and risks, once we have accomplished (1) and (2).