Posts Tagged ‘clinics’

Back To Square One

Written by on February 12th, 2013 – 3 Comments

So as I mentioned in my last post, my diagnosis was recently amended from MS to NMO. (Neuromyelitis Optica) In many ways, I feel like I’m right back at the beginning. A whole new diagnosis means a whole host of new things I need to learn.

I need to be a quick study about NMO because it’s rare and medical practitioners know even less about it than they know about MS. I’ve given my GP an NMO guidebook so she can study up. I may very well be the only NMO patient she ever has. As it is, she only had two MS patients in her busy practice and I was one of them. Fortunately, she has always been extremely receptive to any information I could give her about MS and is equally so about NMO. She may not know a whole lot about either disease, but she is willing to learn and to work with me as a partner in my care. I am incredibly grateful for that.

Now that it’s been determined that I have NMO, I have had to switch both neurologists and clinics in order to receive optimal care for my disease. No matter how well meaning this decision was, it’s been hard. I feel vulnerable. Over the last five years, I’ve built a very good relationship with my neurologist. What I loved best about her was that we really connected and she always saw me not just as a patient, but as a person. I wasn’t merely a problem to fix, a disease, diagnosis or a set of symptoms. This is incredibly important to me, because I am so much more than that. I will really miss her.