Neuromyelitis Optica

Within a day or two of sharing my Multiple Sclerosis diagnosis the MS specialist called and said he would like me to undergo further testing. He wanted me to have another blood test and a new lumbar puncture. After finally receiving all of my previous MRI scans he thought there was a possibility that I actually had Neuromyelitis Optica (NMO) and not MS.

I asked him if I could do the blood test first and if I tested negative for the NMO antibody could we then move on to the lumbar puncture; I still have bad memories from the first four LPs I had done. He acquiesced but as I had tested negative last year for the NMO antibody he warned me that I would likely end up having to go ahead with the lumbar puncture.

My blood traveled to the Mayo Clinic and the results traveled back - this time the test was positive. I have Neuromyelitis Optica. NMO is considered a rare disease. There are approximately 4,000 cases in the U.S. although the number is likely greater as it is sometimes misdiagnosed as Multiple Sclerosis. It used to be considered a severe form of MS but is now known to be it's own disease. The treatment is different as some MS medications can actually make NMO attacks worse.

A really simplistic way to describe NMO is that my body is attacking itself. It's battle plan is to specifically target my optic nerves, spinal cord, and sometimes my brain. In order to stave off these attacks doctors generally prescribe immune suppressing medications. The bad news is that NMO attacks are aggressive. The good news is, if treated during an attack, the damage may not be permanent.

There is no way to know when an NMO attack will happen. I'm going to try to live my life in such a way that I'm not always waiting for the other shoe to drop and hopefully I'll have some degree of success with that. I'll be following up with the specialist in the next few weeks to discuss treatment. For now I'm staying strong and learning what I can about my disease.