My First NMOSD Attack: A Personal Story of Misdiagnosis

Everyone's NMOSD journey can be extremely different or very similar. From what I've seen since joining this amazing site, is that my case is different. I feel that so much is still a mystery about this disease and all the different ways it can attack the body. In my case, my vision has decided to take the biggest beating. With each attack I have had, I've lost some vision in each eye. My optic nerve gets inflamed, causing great pain in my eye socket, and everything looks like a foggy mirror. Sounds fun, right?

The first signs of optic nerve inflammation

The first attack happened in 2006 while I was bowling. I don't think I can ever forget that moment, because it was a huge milestone in my life. The attack went ignored and healed up on its own. The second attack followed a few months later, and I went to an eye doctor to hear startling news that what I'd been experiencing could be MS.

The "wait and see" approach

I was 18 at the time I received this news, and I felt like I was too young for all this. The eye doctor didn't recommend any further testing but suggested that I keep an eye on things. As terrified as I was, I did what he said and promised that if any other issues arose, I'd go see a neurologist.

Waking up numb: the second wave of symptoms

About three years had passed and I felt like I had forgotten all about the eye issues. I was living a normal life with a normal job and a healthy relationship. Then one morning I went to shower and, as I walked under the water, I felt nothing. Literally, my whole body was numb, and I couldn't feel a thing. I kept calm, finished up, and made my way to work.

Once I was there, a pain in my eyes started, and it was unbearable. I took some Advil and tried to continue on with my day. But within hours, my vision started getting blurry, and it was all coming back to me: the same eye problem again, but in both eyes. I called my mother in tears and was panicking. I had no one to cover my management shift and had to stick it out at work until close.

The heartbreak of an MS misdiagnosis

Finally out of work and waiting in the emergency room, I settled in, and countless tests were done. The doctor approached me and told me that I had MS. My heart broke, and I was scared for my life. All my fears from a few years ago came back, and this time, they were true. They loaded me up on a liquid and pill form of steroids to help my vision return.

After a week, my vision came back, but this time not fully. The good news is that I could feel again. This was the first time I had what seemed like a permanent loss of vision after what the doctors determined was an "attack". I still felt normal and could drive and work with no issue, but inside, I hadn't come to terms with this diagnosis didn't want to believe it. To be honest, I was hesitant to receive any more treatments.

The emergency room and search for steroids

Another year passed, and things were going as well as they could be. I had given up on taking the pills I was given because I felt like they made me sicker. My relationship had some bumps because of everything that was happening surrounding the diagnosis, but things were still going pretty well. Then, around Father's Day in 2010, my next attack started. This time, the pain started in my left eye, and within hours, I was in the emergency room shouting, "I NEED STEROIDS!" I was panicking and wanted them to get going as fast as they could, so I didn't lose any more of my vision. Not surprisingly, there were more tests, more MRIs, and more steroids.

From multiple sclerosis to an NMOSD diagnosis

This time, my neurologist came to me with a new conclusion. He said, instead of having MS, I had something called NMO. I had no idea what it was, and my partner did all the research for me. I was told by my partner to not look anything up because it'd make things worse. I'm one of those people who Googles things like NMO symptoms and immediately thinks that I'm going to die.

Facing the reality of potential vision loss

I listened to the bits and pieces that I was told about NMO and realized that I might very well go blind one day if this disease progresses. Who would I be if this got worse?

This story is part one of a multi-part series about Dan's history with NMO. Read the second part now about the journey into fear. 

What methods have helped you recover from attacks?