Unfortunately, this did not last. Two days after stopping the medicine, I was blind again and treated. Again and again it happened, ending with a week in the hospital. Luckily, Dr. Kelman referred me to Dr. Michael Levy at Johns Hopkins. He is the world authority on what I learned could be Neuromyelitis Optica (NMO). Dr. Levy took my case and by August, he put it to rest with Rituxan. A blood test for NMO was negative. After repeating this more than once, he said that I was in the group of those who they considered as having NMO but tested negative for it. This happens in about 30% of patients. In other words, I was in the Spectrum Disorder of NMO, or NMOSD. It was all very confusing, and I tried to be brave.
Despite the Rituxan, I still suffered attacks about once a year, either in one eye or the other, and once with a small lesion on my spinal cord. This caused progressive weakness and uncontrollable spasms in my legs as well as loss of bladder control. All without much damage. Finally, after my last attack, Dr. Levy decided that maybe it was time to check me for the Myelin Oligodendrocyte Glycoprotein (MOG) antibody, and it was in fact positive. After seventeen years in the making, I finally had my “smoking gun,” MOG Antibody Disease (MOGAD).
I am lucky as others are left with bigger scars from this disease. I have to deal with the occasional pain in between my shoulders, and while I can see, I have visual issues. Color is dimmer, I need more light, and I can’t pick things out as quickly in a complicated arrangement of objects. Shopping is not what it used to be and looking for things in a messy drawer sometimes frustrates me. I have had my tears, but I had to find the silver lining.