Choose Your Language:
Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
My story with neuromyelitis optica spectrum disorder (NMOSD) began in 2021, although at the time, I had no idea what was happening to me. It started with something subtle yet terrifying—loss of peripheral vision in my right eye…
It looked like a curtain had been pulled halfway over my sight. I went through multiple tests, scans, and doctor visits, but every report came back negative. No answers, just more uncertainty. I was told everything looked “normal,” but I knew deep down something wasn’t right.
I was treated with IV steroids for 5 days, followed by oral steroids for 2 weeks; that was the only treatment I received back then. No diagnosis, no long-term plan—just temporary relief and lingering questions. I tried to move on, pushing through the fear with hope that maybe it was a one-time thing. For a while, it seemed like it was. Then came 2024.
This time, it hit harder. My left eye began to blur, and the vision loss was more severe than before. It wasn’t just my eyes—my body started to change too. I felt numbness creeping along the right side of my body, and I began losing my balance severely. At one point, I wasn’t even able to walk from my college bus to my classroom. Every step felt like a struggle. I was terrified, exhausted and overwhelmed by how quickly things were spiraling.
Initially, I received the same treatment as in 2021 but again, all the reports came back negative. The familiar frustration returned.
Eventually, I was referred to a new hospital. That referral changed everything. After thorough evaluations and fresh eyes on my case, I was officially diagnosed with double seronegative NMOSD—meaning I tested negative for both AQP4 and MOG antibodies, but my symptoms and clinical findings clearly matched the disease. For the first time, everything made sense. There was a name, a reason, a direction.
I was admitted and again started on IV steroids followed by oral steroids as a backup. I was started on Rituximab—two doses that marked a real turning point in my journey. It didn’t undo everything I had been through, but it gave me hope. It was the beginning of a new chapter—one where I could finally start managing the condition instead of just enduring it.
NMOSD is now part of my story. It’s been a road full of confusion, fear and pain but also strength, resilience and clarity.
