My MOGAD Story, Parts 1 & 2 by Becca Salky
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.
After obtaining my RN license, I worked on an inpatient neurology unit in DC, hoping I could help other people living with neurological diseases. It was great to be able to empathize with and comfort people who may have had similar symptoms as I did, but it was also exhausting and hard on my body. Because of the stress of the job, I was sick a lot and had a couple of flares of optic neuritis. Eventually, I decided I needed to take care of my mental and physical health, so I left that job. I’m so grateful for my experiences and that I accomplished my goals of finishing nursing school and working as a nurse, but I’m not sure I’d do it again if given the option. I have since learned how to listen to my body better so that I don’t push it so much it starts to break down, which is often a challenge for those of us with chronic conditions.
After leaving my job and being stuck inside because of COVID-19, I decided to seek support online. I went onto Facebook and found a group run by The MOG Project that had about 500 members at the time. I started getting more involved, and in June 2020, I started a weekly support group for young adults with MOG antibody disease and NMOSD. Since then, I have met hundreds of people with MOG and NMOSD, some with similar stories to mine and some with very different experiences. I have connected with these people more than I’ve ever connected with my peers, and I am so grateful to have found people who truly understand what it’s like to live with chronic illness.
When Dr. Levy moved to Mass General in Boston in 2019, I called him to schedule an appointment. When we spoke, I told him I had recently resigned from my nursing job, and he offered me a job starting up the first clinical trials in MOG. I moved in 2021 and have worked in the Neuroimmunology Clinic at MGH ever since. I helped launch the first two clinical trials for MOG, which are both active and enrolling patients at MGH and various hospitals in the US. I’ve also gotten the chance to learn from and help educate new doctors in the field, which has been incredible. I have been able to share with the next generation of doctors what I feel has been overlooked in the MOGAD research, what my experience as a patient has been, and how care can be improved for me and my peers. It’s been incredible working with doctors, researchers, nurses, coordinators, and everyone involved in trying to find a cure for rare neuroimmune diseases.
As I got more involved in the world of MOGAD, NMOSD, and related diseases, I continued to learn more about the different patient organizations and the work they do. I started listening to SRNA’s Ask the Experts podcasts, learned more about SRNA’s mission, and decided I wanted to get involved.
I had my first SRNA volunteer experience in July 2023 at the Quality of Life Family Camp in San Antonio, Texas. It was a truly magical experience for which I’m so grateful. Camp is so special because it offers a place for patients, families, healthcare providers, and volunteers who understand the world of chronic illness to be together for a week, be themselves, and support and learn from one another. Although not everyone at family camp has the same symptoms or disease, they all understand the struggles of dealing with our daunting medical system, endless appointments, and finding support. I wish there were more places like family camp. I recently also became a Peer Connect Leader, and I am excited to continue meeting and supporting these amazing patients with MOGAD and related diseases. I am so thankful for SRNA and the community they’ve created.
Whether you’re a patient, supporting a patient, or a health care professional, I encourage everyone to contribute to advocacy organizations like SRNA. These non-profit organizations need all the help they can get, whether through financial contributions or volunteering. If you volunteer, I promise you’ll meet so many caring, supportive individuals focused on improving care for people with rare neuroimmune diseases.
Articles represent the views of the author and do not necessarily represent the views of SRNA.
