Now that I have been diagnosed with Myelin Oligodendrocyte Glycoprotein Antibody Disease, or MOG-AD, I have met others who are afflicted and have listened to their stories. They all start similarly, with an acute attack, out of the blue, and always marking the start of an unexpected turn in health. My story is different. I experienced unexplained chronic fatigue and a slight dimming of vision: a little peek of what was to come.
Almost 19 years ago at the point of writing this story, I was a young mother, with a wonderful husband and 2 beautiful little girls. By all rights I was in the happiest part of motherhood. I had a good life with my family and I had plenty of energy. I don’t really remember how or exactly when it came on, but I started to notice that I was feeling very fatigued, shaky and weak, especially when exerting myself. I had labored breathing at times and I felt like my legs weighed a million pounds. It is hard to describe, but it seemed like if I stopped struggling to breath, my body would just stop breathing naturally.