“What else is going on?” Matt, our family doctor of more than 15 years, asked. It was at the end of a mid-August appointment, one I’d made due to pain in my right shoulder, elbow, and hand. I wasn’t sure if it was related to MS or not, I just knew that it was getting really hard to use my right hand: pain was shooting through my elbow, and lifting my shoulder brought tears to my eyes.
The shoulder and elbow issues were relatively new. The hand issue wasn’t. I’ve been slowly losing capacity in my right hand for the last 18 months, dutifully reporting its diminishment to my neurologist at our biannual updates. But we had never really addressed it and I grew to assume that the hand — and appendage — was a goner, an MS casualty much like my right foot and leg, slowly becoming little more than a mean-spirited hanger-on that could no longer be trusted.
For some reason, I thought my neurologist and I were trying to win a bigger war and develop an approach that would deter the disease’s progression. But my symptoms only grew worse over this four-year effort, and if there was any type of bigger plan to address those issues (which now included my very sore arm), I wasn’t aware of it.
Which sort of made sense. I got into the MS game sideways, running through six neurologists over the course of a decade before finally receiving my diagnosis from lucky No. 7 in late 2013.
It took me a minute to fully understand that MS is a disease of the central nervous system (CNS). It took me far longer to understand that there is no single entry point to MS; longer still to realize that meant someone needed to corral, coordinate, and connect records and data and treatment between all of the doctors who might address the spectrum of issues a struggling CNS might present.
I knew Matt’s open-ended question was his way of inviting me to share any other problems he might help with.
“Yeah, there is something else,” I said, like a lawyer who knows the answer to a question before he asks it. “I’m not quite sure how to say this, but can you tell me who is supposed to be in charge of managing my MS? Because I don’t think it’s you.”
I wasn’t quite sure who that person was. But I had a guess.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?