My MOGAD Story, Part 1 by Becca S

I grew up in Washington, DC, but went to college in upstate New York, where I received two degrees before moving back to DC for a bit. I lived a pretty “normal” life. I went to public school until middle school, went to summer camps where I sailed and waterskied, and participated in every play or musical I could find.  

I got my bachelor’s degree in psychology at Skidmore College in upstate New York and another in Nursing at NYU. Currently, I’m in Massachusetts, working for Dr. Michael Levy in the Neuroimmunology Clinic at Massachusetts General Hospital, where I’ve been able to participate in research for rare autoimmune diseases. I’ve also had MOG antibody disease for 25 years.   

In 1997, I was four years old and recovering from an upper respiratory infection when I woke up paralyzed from the waist down. I army-crawled my way to my parent’s room using just my arms, and they rushed me to the pediatrician’s office, thinking this was just a weird response to the infection. The pediatrician sent me straight to the Emergency Room, where I was diagnosed with Acute Disseminated Encephalomyelitis (ADEM). As the encephalitis set in, I began to regress cognitively to the point of speaking like a two-year-old. Fortunately, a smart doctor at Georgetown Hospital started me on high-dose steroids, and I was able to walk again within a couple of days. Unfortunately, within a few weeks of regaining mobility, I developed blurry vision in both eyes. I was diagnosed with Bilateral Optic Neuritis (ON) and again treated with steroids.  

My case confused the doctors because although they had seen these two diagnoses together, they hadn’t seen them in someone my age. They said these were symptoms of Multiple Sclerosis (MS) but that I was too young. Since there was no explanation for the ADEM and ON, they didn’t propose any long-term treatments. As soon as I regained my sight, I was sent home. One year later (and every year after that until I was ten), I had ON in one eye or another. It was around this time that I became a “medical mystery,” as so many of us with rare neuroimmune conditions have been called. I don’t remember much about my early hospitalizations, other than the teams of doctors coming into my hospital room and doing the same tests on me over and over, which I was able to perform myself without their prompts by the time I was 11. I also remember the daily hospital ice cream, the gift shop, and the “roller coaster rides” my mom would take me on – pushing my wheelchair down the hospital ramps as fast as she could. I was young and resilient and didn’t fully understand what was happening or how this would impact my life.   

I was hospitalized ten times between the ages of 4 and 10 years old, and then suddenly, everything calmed down. I didn’t have any relapses between 10 and 15 years old, and I lived a pretty average life until 2010 when I had a tonic-clonic seizure in the middle of a pre-algebra test (which I got an A on, by the way). After the seizure, I began having optic neuritis attacks 2-3 times a year. My parents were desperate to find answers and did as much research as possible. They had already made me a medical history binder with every possible piece of relevant information and emphasized that it was my most important personal possession. I carried it to every appointment and continue to do so to this day. They helped me set up care at Children’s National Hospital in DC and Johns Hopkins in Baltimore. I traveled to the Mayo Clinic in Minnesota and Children’s Hospital of Pennsylvania to meet with specialists they had read about. Sometime around 2010, I was given the diagnosis of Neuromyelitis Optica (NMO) like-syndrome. I didn’t match all the diagnostic criteria for NMO so that I couldn’t be officially diagnosed, but they knew my disease resembled it, so “NMO-like syndrome” it was. I was frustrated, confused, and upset that no one seemed to know what was going on.   

As many of us who care for those with chronic illness know, it’s exhausting going from doctor to doctor, and it can be even more exhausting trying to put your symptoms into words. The responses given by the doctors don’t always help us much. There’s a natural hope and expectation that these experts will have the answers or be able to help, but with rare diseases or invisible illnesses, this isn’t always the case. I don’t want to speak for others, but I have personally had many symptoms and feelings invalidated and dismissed, likely because the doctors didn’t have the answers and didn’t know how to admit it. So, I decided to take my confusing case and try to figure it out for them.   

I did my own research, obsessively looking for answers about what was going on in my body. I spent hours in my high school’s online library reading through medical journals to find cases similar to mine. I eventually stumbled upon papers about Myelin Oligodendrocyte Glycoprotein (MOG, as it was known then and how I’ll mostly refer to it here), which I felt described my symptoms perfectly. When I mentioned this to my doctors at the time, all I remember was that none of them seemed to hear what I was saying.   

It was around this time that my parents found me a new specialist, very highly rated, close to where we lived – Dr. Levy. When I went to see Dr. Levy at Hopkins, he listened to me describe my symptoms, empathized with what I was going through, and even entertained my ideas about MOG and why I felt it better fit my symptoms. It was really meaningful to me to be heard and believed finally. I stopped feeling like I was spinning out of control and like maybe there was some hope in sight. Dr. Levy was impressed with my research and agreed I might have had MOG, but explained there wasn’t yet a diagnostic test for it, and to get me on effective treatments, they would keep the diagnosis of “NMO-like syndrome.” I was disappointed but excited that I was believed and taken seriously and that Dr. Levy thought I was capable of entering the medical field, which I eventually did.   

From 2011-2015, while in college, I continued to have 2-3 optic neuritis attacks a year despite being on immunosuppressive treatments. I traveled to DC for hospitalizations and treatments, and Children’s Hospital felt like a 2nd home. Whenever I went back to Children’s, while I dreaded the isolation of being in the hospital and the many IVs, I looked forward to seeing my favorite nurses, who made such an impact on my stays and my life. So, while finishing up courses for my psychology degree, I decided I wanted to be a nurse, and in 2016, I started an accelerated nursing program at NYU.   

Right before I started nursing school, Dr. Levy told me that Mayo Clinic had developed a diagnostic test for MOG. I immediately got my blood drawn, so excited to prove my long-held beliefs to the doctors, but the test came back negative. I quickly realized I would have to face the idea of living with uncertainty.  

 When I moved to NYC for nursing school in 2016, I was exhausted by all my medical problems, and I wanted to do anything other than explain my entire medical story to new doctors. I went to my first appointment with Dr. Kister at NYU Langone with a medical binder in hand and walked him through the previous 15 years of medical history. I was examined by the doctor, his fellow, and the neuroopthalmologist, and was exhausted by the end of the appointment. The next day, though, they called and confirmed my diagnosis. The fellow told me that after I left my appointment, he and Dr. Kister called Mayo and asked them if they had any of my blood stored from my visit there six years prior, from before I was on immunosuppressants. By some miracle, they did, and they used that blood to re-test me for MOG. When the test came back positive, I was ECSTATIC to have my answer. The treatments didn’t change much after getting the diagnosis, but I felt affirmed and better equipped to handle the disease.   

To be continued…