From Misdiagnosis to Hope: My Journey with NMO & MOGAD
Diseases
Chronic Pain, COVID-19, Immune Disease, Neurological Disease, Rare Disease
Issues and Challenges
Brian has encountered: Access to Expert Providers, Insurance Issues, Rare / Underserved Disease, Transportation, Disability, Discrimination (nonmedical), Prior Authorization
My Story
In 2015, I got a cold that I couldn't shake. The doctors at a local outpatient clinic had tried a few different antibiotics, but nothing was working. My symptoms devolved into blurry vision, and once the abdominal pain started, I went to the emergency room of a prominent teaching hospital.
Within a few hours, I was blind and paralyzed from the chest down.
About two weeks later, I was lying in bed when the neurology resident came in for his morning check-in. He leaned against the red flip-top biohazard container on the wall opposite my bed, arms crossed; he confidently declared, “We know what is going on.”
“Thank God,” I thought, finally some answers.
He told me I had NMO.
He went on to explain, “It's the same as MS, but you won’t get brain lesions,” and that my immune system was attacking my spine and optic nerve. I was stunned and had so many questions.
“What is the prognosis?” I asked.
As he delivered this next bit of information, he smiled with accomplishment, having solved my puzzle. He reminded me of a new parent, beaming with pride.
He told me, and as you can imagine, these words are seared into my brain, “You will go blind a little here and there, and in about five years, you will be blind. After that, it is a matter of time until you get a lesion high enough on the spine to knock out your respiratory drive. If you are lucky enough to get to treatment in time, you will be on a vent…many people die of pneumonia at that point.”
I remember my entire world became so small. Nothing existed beyond the doctor’s voice, those words, and that self-aggrandizing smile. I was trying to gather my thoughts and shake off the blow I just took. He spoke again, “I will be back for morning rounds.” He turned and left.
Without him there, my world got even smaller. There was nothing now. It was so quiet I couldn’t even hear myself breathing. My vision, which was blurry to start with, got worse as the tears flooded my eyes. The isolation was the absolute worst thing I had ever experienced. I had nothing. I had no one to lean on, no information, and I realized I had no future.
I would walk out of a rehab facility six weeks later using a walker. I know I am fortunate, but it was challenging to maintain perspective when my world was collapsing around me.
I spent the next 18 months lost in a vicious cycle of relapses requiring infusions, hospitalizations, testing, and appointments.
Finally, my neurologist consulted an NMO specialist. They agreed to try a new treatment plan and to transfer my care to him. Even though I would have to travel out of state and deal with the logistics, regulations, and insurance issues that come with it, I jumped at the chance.
A few months later, I met the specialist, and I was rediagnosed with Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD), which is similar to NMO.
The real tipping point was when he explained that the “five-year” prognosis I had received was outdated and false. “You need to plan for a full life because NMO/MOG is not going to kill you.”
That was the beginning of the rest of my life. I had to rethink everything; I was going to grow old.
I realized I had been living in the shadow of a ticking clock. More accurately, my life had become so focused on the ticking of the clock. I wasn’t even living, just waiting for the end. I had been consumed by the loss of who I was and how this illness robbed me of my present and future. I realized a lot of my anger was rooted in the shame of having an invisible illness. I knew how colleagues and acquaintances saw me. I heard the whispers, “He doesn’t look sick,” when I missed work. “He doesn’t know what he is talking about,” as I tried to clear the brain fog that came with my medications. The murmurs from people as my voice cracked, and I stood there sweating during presentations because I was in so much pain and exhausted from just trying to keep my balance. I had bought into the stigma of chronic illness, doubting and devaluing myself. This stigma is pervasive.
This was my journey with NMO & MOG. Sadly, I would learn that my story is not uncommon within our community, which is why I have chosen to speak.
I understand that with a vast number of rare diseases, we cannot expect a clinician to have an intimate understanding of all of them.
But I do expect them to have the latest information before giving someone a diagnosis, especially one that is coming with a death sentence.
I expect them, as professionals, to recognize their limitations and be willing to say, “I’m not sure,” and seek an expert.
Most of all, I expect them, as human beings, to show empathy and understand the gravity of their words and actions on the people who are looking to them for help.
My Motivation and Inspiration
I hope to encourage people to allow themselves some grace but understand we must constantly push forward because even small victories are victories.
I hope to help build the narrative of NMO and MOG based on the latest scientific data and around the examples of what patients have accomplished through perseverance and strength of spirit.
I hope to help patients connect with opportunities that give them a better understanding of NMO and MOG, treatment options, and support systems.
I hope to help develop resources and tools to educate medical professionals about NMO/MOG and help them understand their role in shaping patient perceptions and assisting patients in maintaining their dignity.
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