It started small. A backache. A lower backache. I took some Tylenol. I went to a yoga class. I had an awesome Bloody Mary at Miss Shirley’s Cafe. I even ordered a new mattress. I tried everything I thought seemed common sense to address the level of pain I was feeling. Within 10 days of onset, I was paralyzed from the belly button down. I was even sent home from the ER.
I was finally admitted the day after the ER visit, administered intensive IV steroids for 5 days and then was moved to a rehab hospital to learn to walk, learn to use the bathroom, and figure out what the eff my new life would be. After a bunch of tests, I was diagnosed with Myelin Oligodendrocyte Glycoprotein Associated Disorder – MOG or MOGAD for short. I had a lesion in the sheath around my spine and it was disrupting the signals between my brain and my lower body.
It was terrifying! Would I ever walk again? Are my legs going to fall off? Would my husband leave me? Do I have to move? What will I do with all my shoes??
Prior to my diagnosis, I was an extremely on-the-go person, out most nights and weekends with friends, family, and my dog. Dealing with the psychological symptoms of MOG was sometimes more challenging than the physical symptoms. Over the last year and a half, my life has been very different. Not all bad, not all good. Now I have a happy medium. I have met with an optometrist, ophthalmologist, neuro ophthalmologist, three neurologists, a physiatrist, an oral surgeon, a nutritionist, a physical therapist, an occupational therapist, a mental health therapist and many nurses. I have gotten glasses, lost a tooth, gained a ton of weight (yay steroids!), and graduated from a wheelchair, to a walker, to a cane.
I have also learned who my true friends and supporters are. Now that I can walk and drive again, my life looks more like it did before I woke up paralyzed that day. But there were times, especially early on, when I had to rely on the care of strangers to take care of my very basic needs, that it seemed impossible things would go back to close-to-normal.
I have found a wonderful, work-from-home job that was never on my radar before. I got to jump to the front of the boarding line with my cane for a flight to Jamaica. I got to go to Jamaica! I have a brilliant medical team who listens to me and validates my concerns. Though the symptoms I experienced can mirror many other disorders, I am grateful to have a treatment plan and a name to go with what I have gone through.
I am grateful for the research being done every day to bring better treatments to help me and others with MOGAD and other autoimmune disorders that affect mobility.
By Aparna Nagaraju
