How it Came to Devic's

My Devic's experience is minimal as I was just diagnosed on June 22, 2010. I'm definitely not the type to sit back and wait for things to happen so I'm trying to educate myself as much as possible. In the process, I hope to share any information I find or receive with you so that we may all learn together.

This blog will be a compilation of my journey with Devic's. Below is a very brief version of how I found myself with a Devic's diagnosis.

I was originally diagnosed with Multiple Sclerosis (MS) on October 29, 2009. I started Copaxone on November 7, 2009 to help slow the progression of MS.

I've been having vision issues for about a year now and it's progressively getting worse. I have blurry vision in both eyes that is off and on all day, I also have occasional double vision. I voiced these concerns at a routine appointment in my neuro's office where a second Brain MRI was suggested. Unfortunately, I was dealing with the NP at the time and she dropped the ball with getting the referral to my insurance company.

For two weeks I waited for her to put in my referral for an MRI. My patients ran dry and I ended up going to my hospital ER and getting the MRI done myself. Two doctor's from the neurology team at the hospital asked me why I thought I had MS? I told them, "because an MS Specialist diagnosed me and I've been on Copaxone since November. Why wouldn't I think I have MS?" This understandably put a lot of questions in my head.

A week later I saw the NP in my neuro's office to go over the results. I mentioned that I am now questioning my diagnosis and I would like an appointment with me neuro ASAP! I got an appointment less than a week later. (Let me just say, my current neuro is THE BEST! (in my area at least) But he's not the neuro who diagnosed me. I was seeing another MS Specialist within the practice but he left shortly after my diagnosis to volunteer overseas.) Once I got in the room with my neuro, he immediately pulled up my spinal MRI from back in October 2009. My previous neuro had said that the lesion on my spine was a typical MS lesion. But as it turns out, that's not right at all.

I believe my current neuro screwed up by taking his partners word for it as far as my MS diagnosis goes. I don't believe he really went over any of my tests until he heard I was questioning my diagnosis. The lesion on my spine is in my spinal cord, it is also "long and stringy" according to my neuro and spans the length of 6-7 vetebrae. How the heck my diagnosing neuro could think that was a typical MS lesion is beyond me. Even I know it's not typical for MS. He then told me that the lesions in my brain, I have 2-3, are not typical of MS either. From what I've learned, having NMO means no lesions on the brain but after that statement it always say's, "but that's not always the case".

Back in November 2009 I had the blood test for the NMO IgG antibody which came back negative. My neuro said that I am extra, extra special in the sense that A. I have NMO and B. I tested negative for the antibody. Judging from his statement, he doesn't have many, if any, other patients with this disease.

At the moment, I'm trying to see if my insurance will approve a visit to the Mayo Clinic in Arizona. I want to go through all their testing and just further confirm my diagnosis or put it in question. They seem to be at the top of all the research happening with NMO and I want the best!