My first isolated neurological episode was in 2001. It was a stand alone episode that mimicked a stroke. After four hours in the ED they sent me home with no answers. In March of 2003 I was having weakness with pain as well as visual disturbances. I scheduled back-to-back appointments with my PCP’s PA and the ophthalmologist. The PA said “nothing’s wrong with you”. The ophthalmologist said “it might be MS”. Both doctors had the same information from me!
Except for a medicine cabinet full of prescriptions, over the counter pills and supplements to reduce my many symptoms (not all MOG), I cope by staying in touch with friends and family through Facebook and Instagram. I can see enough that by increasing size I can enjoy online comics. I have found some new favorites and am trying to catch up.
I was treated for MS for four years before my first neurologist gave up on me and sent me to the Rocky Mountain MS Clinic in Aurora, CO. The PA there saw me 15 minutes and said “sounds like NMO”. I never tested positive but they were sure it was within the Spectrum.
Between June of 2007 and June of 2019 I continued to test negative for everything. Dr. John Corboy led my team and relied on input from Dr. Jeffrey Bennett, the neuro-ophthalmologist also at the clinic. In May of 2014 I became legally blind after a very bad attack. The attacks continued at least three more times over the next two years. Back in 2016 I had an attack just two weeks after what would be my final Rituxan infusion. Dr. Jeffery Bennett was on call that weekend and said “enough’s enough” then started the process for getting me Actemra infusions. He tried the previous year to get me in the trial but they had said no. By the time I was released from the hospital the insurance had approved my Actemra infusions. I go every four weeks. March of 2016 was my last attack! I tied my record of four years relapse free last month. June of 2019 I finally tested positive for MOG antibody disease.
I have a good team of doctors and they usually defer to the neurological team. The tough part is when something new starts up. Is MOG-AD causing it? Age? Or something new!
My day-to-day symptoms include severe visual disturbances and moderate muscle weakness. Often there is vertigo and increased body pain but it isn’t a daily thing. My pain is controlled as best as can be expected. On bad days I take the strong meds and rest. Luckily, those days are less frequent than they used to be.
I have a handful of friends from my old life that stay in touch, one of whom takes me to Aurora whenever I need to go. My mother and I live together and she is a great help…even at the age of 83.
By Kandias Overton
Written in 2020, republished for 2023.