Posts Tagged ‘NMO’

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.

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The Story Of A Rare Bird

Written by on January 15th, 2013 – 12 Comments

Around this time last year, my vision got blurry like someone had smeared Vaseline over my eyes and it felt like my right eye was being pulled out of the socket. The pain was somewhat like the bad migraines I have frequently and also similar to a sinus infection. I went through four episodes of this between February and July. Despite numerous attempts to get to the bottom of why this was happening, for some reason the obvious answer kept being overlooked. Finally in late July, I happened to mention it to my MS Specialist. She immediately referred me to a neuro ophthalmologist who ran a ton of tests and informed me that my problem was optic neuritis. In light of my medical history, he wanted to run an additional test, for NMO-Neuromyelitis Optica, a disease which very closely resembles MS.

I’d had an NMO test 5 years ago when I was in the process of being diagnosed with MS and it had come back negative. While I was waiting on the results of this latest test, I learned through the MS Society that I had the opportunity to learn more about NMO by attending a patient information day out at UBC. I signed up and went.

Two weeks later, my NMO test results were in. I’d tested negative again. You would think that would be the end of it, but no. The problem is that the NMO test is not foolproof. Forty percent of people who get a negative result test as a false negative. You can test negative and still have NMO. Fortunately, thanks to attending the NMO patient information day, I was able to arrange to get a consult with an NMO expert, one of two in all of Canada.

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