The Iron Ring

In the Summer of 2009 just after I finished my PhD I started having some weird symptoms in my legs. I noticed it when I walked to my car at the end of the day. It’s a long walk, so long that they offer shuttle service I hardly ever take, and I noticed that sometimes by the time I got to my car my legs were so…….. tingly……….. that I had to wait for them to return to normal before I could drive. I thought it was my shoes. Then I thought it was my pants. Then I thought it was the heat. Then in the Fall I went to a doctor. She detected an iron deficiency but iron pills didn’t change anything. She sent me to a neurologist who ordered an MRI and discovered a spot on my spinal cord.

I can still remember where I was when he called and told me the MRI showed a spot on my spinal cord that indicated demyelination. I remember crying. As a neuroscientist I knew enough about spinal cords to be scared. I knew how much time and money was spent on trying to figure out how to reverse the process of demyelination. I knew about MS. But, to my surprise and relief, after a host of tests it was clear that I didn’t have MS. That one spot on my spinal cord was the only ‘positive’ result. I could write a long list of diseases I don’t have, many of which I can’t pronounce. And my neurologist told me that although it wasn’t MS, I was probably going to develop MS. I will never forget how cruel it was to tell me this casual hypothesis so offhandedly and with no statistics.

In the end, all I really have is a weird spot on my spinal cord and nothing else. For some patients, it happens again and again and sort of ‘becomes’ MS but I have few risk factors for that. The more time goes by, the better my chances of the whole thing ending here. They gave me this awesome name/diagnosis, but basically that’s just medical jargon for ‘inflammation of the myelin that goes across the spinal cord’. The whole experience reminded me of something I read in the New York Times about detecting some forms of cancer. Doctors are starting to think that some cancers, particularly breast cancer, go away on their own and that super-sensitive detection could lead to unnecessary treatment. But people got upset and maybe even frightened at the idea of changing the standard age of routine screening to 50 from 40.  And who can blame them for being scared? Especially when mammograms are the accepted gold standard for detecting breast cancer.

But what are the psychological and societal implications of knowing too much about our own health? We can detect pregnancies now using home tests before a period is even missed leading to unnecessary heartbreak when the pregnancy fails. In at least some areas doctors are starting to understand psychological impact of knowing too much about our health; patients must undergo counseling before having a test to see if they will develop Huntington’s disease. But many times we become so enticed by the idea of having conclusive testing that we run full at full speed. I don’t know about you but I love diagnoses. Perhaps it is the American way?

I know how lucky I am that my medical issue began and ended at that MRI. Believe me when I say that I remind myself of that every single day. But some part of me wonders if I dodged that bullet how many more am I dodging without knowing? Which ones would I be better off knowing about? And what sort of test could I have done to determine that?