Rare but not Defeated – My MOG Story

By Cynthia Albright

My name is Cynthia Albright, and at the age of 45 I was living what I thought was one of the most joyous times of my life. My husband and I were going to be celebrating our 22nd wedding anniversary, both of my children had already graduated from college, and I was expecting my first grandchild. Then, my life as I knew it quickly came to a screeching halt.

In November 2012, I was standing in my kitchen preparing dinner, when out of nowhere, I experienced the most painful, super sharp glitch of pain in my left eye. It was as if somebody had snapped my eye with a rubber band. The pain ran from the base of my skull to the back of my left eye. I literally stood there completely in shock.  At that point in time, I thought this episode was just going to be a topic of conversation at the dinner table. Boy, was I wrong.

About five days later, the eye pain started. Every time I moved my eyes from side to side, glitches of pain and light appeared. I decided to go to the emergency room, knowing there was something terribly wrong. They examined me but didn’t find anything wrong with my eye. After seeing several more specialists, I was referred to Dr. Shalom Kelman. He is a neuro-ophthalmologist. He examined me and diagnosed me with Optic Neuritis. I had three more Optic Neuritis flares within a year’s time. The last Optic Neuritis flare was just five days prior to my first visit with a multiple sclerosis (MS) specialist, which very well could have made a bad situation into a worse situation. Some of the preventative treatments for MS can actually make Neuromyelitis Optica (NMO) worse. Who knows how well I would be functioning right now if I had been treated with the wrong drugs. I woke up blind in my right eye, I had terrible back pain, and I hadn’t walked straight for two days prior. I saw Dr. Shalom Kelman, and based on all of my neurological symptoms, he suspected that I had NMO, and not MS. He immediately had me hospitalized, and IV Solu-Medrol was given to me. On the second day of my hospital stay, my vision had been mostly restored. I was then referred to Dr. Michael Levy. He is an Associate Professor of Neurology at Johns Hopkins and also one of the top NMO specialists worldwide. Dr. Levy was able to give me the diagnosis of NMO based on diagnostic criteria, even though I tested negative for the NMO antibody, which is not unheard of. I was immediately started on a preventative treatment. It is called Rituxan. I currently receive four Rituxan IV treatments every year.

In February 2018, I was tested for another antibody called Myelin Oligodendrocyte Glycoprotein (MOG). The blood test results for this disorder came back positive. So, my diagnosis was changed from NMO to MOG Antibody-Associated Disease. Since my Rituxan treatment has kept me stable, with zero flares, there was no need to change my treatment.

A great friend of mine, her daughter, her sister, and myself have started what we call the MOG project. Our mission is to represent MOG patients, their families, and caretakers that are seeking resources to help deal with the ins and outs of this very rare disease. I am proud to be a volunteer for the TMA, and I am grateful that they were able to take us under their wings. I am eager to learn more about Acute Disseminated Encephalomyelitis (ADEM), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), MOG Antibody-Associated Disease (MOG-ab disease), and Transverse Myelitis (TM), including Acute Flaccid Myelitis (AFM), so I can pay it forward by helping to spread awareness and raising funds for research with the ultimate goal of finding a cure, as, for many, it is a race against time.

For more information on MOG antibody-associated disease, please listen to our recent Ask the Expert podcast here: https://tma.ong/MOG-podcast.

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