Sunday, September 28, 2014

An n of one

Another tough one to put down in words. On Monday I had a follow-up appointment with my neurologist to discuss my MRI and various other test results. There's a lot that's inconclusive - apparently my body doesn't follow the rules of how to be healthy, or how to have any particular illness! There's a lot that it's doing that's suggestive for MS, but a lot that isn't. Dr. T. believes I have something called neuromyelitis optica. It's similar to MS, but not quite - it affects the eyes and spinal cord rather than the brain (this is what my MRI shows) and is usually more aggressive (luckily, I haven't had the sort of acute transverse myelitis that some NMO patients have - that's what was giving him pause in making the diagnosis).

The statistics for NMO are terrifying. I made the mistake of going home from my appointment and reading medical journals. One of them gave a five-year survival for NMO. Lots of sources talk about percentages of people who are blind, paralyzed, and incontinent after five years. That's really different from MS, where everything I've read reassures that life expectancy is near normal, and pamphlets remind anxious patients and families that most people with MS actually don't need a wheelchair, or at least not for a long time. Reading those articles made for an emotional evening. After a few hours, all I could do was hold the largest cat, shake, and heave. Eventually I took a double dose of sleeping pills so I could just pass out.

I always tell my students to be suspicious of statistics. Many of them, especially those in the sciences, see primary sources or articles with numbers in them, and evaluate those sources as more reliable than ones without stats. I generally approach that by telling them all about how the 2012 PhD cohort in history was 100% left-handed; has a twin; sings opera; other details about me that are not universal among my peers. Eventually, they get suspicious, and I fess up that I'm the only student who started the program that year. I can try to draw big conclusions, but none will be particularly reliable with an n of one.

Luckily, a few people on an NMO Facebook group that I found told me that the prognosis statistics are far out of date, anyways. For those on a good treatment plan, those statistics basically don't apply. There's nothing current in the medical literature that will say how I'll fare in five years, ten years, twenty years. Once again, I'm an n of one. That's not exceptionally reassuring, but I'll take what I can get.

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