Diagnosis: Neuromyelitis Optica Spectrum Disorder
California, United States
My journey began on June 30th, 2012. I had just been laid off from my job. It was a stressful time as I was about to transfer to a university for my Bachelor’s degree. Early that evening, I started to feel feverish and laid down thinking I just caught a bug. When I awoke, I felt pins and needles all over my limbs. My mother quickly rushed me to our local emergency room. The doctors did various tests including a lumbar puncture. The initial diagnosis was Transverse Myelitis. They were able to get me back up on my feet. Within two weeks, I went home walking with the aid of a walker. The doctors declared that I was fine and didn’t need to go home with any medication. How wrong that was.
I wasn’t even home a week and I had my second episode, but this time much worse. Back we went to the hospital for more MRIs, blood tests, and lumbar punctures. This time, I was seen by different doctors who knew nothing about my first episode. This time, they said I had meningitis but my mother argued that it wasn’t. She urged them for an MRI of my brain and spine after I began to exhibit eye pain, floaters, hallucinations, and was speaking incoherently. My right arm and hand were curled in towards my body and once again I was paralyzed from the chest down. That evening at the urgent plea of my mother as I was in a coma, I was transferred to UCLA in Los Angeles by ambulance. Shortly after my arrival, my mother was informed by the attending neurologist that my lower body would be paralyzed forever. By this time, my mother was on a mission to secure the best possible outcome for me.
A few days later the attending neurologist diagnosed me with Acute Disseminated Encephalomyelitis (ADEM). Once again my mother said, “No, we want a second opinion.” She pushed forward and had another neurologist review my tests. My new neurologist finally diagnosed me with Neuromyelitis Optica (NMO). From that point on, I was given the relevant tests and treatments for NMO. I am paralyzed in a wheelchair but it’s my dream to attend Project Walk in Santa Monica, CA.
It’s been a painful journey trying to recover and overcome the complications from NMO but I have a stronger will and spirit than this disease. With the grace of God and the support of my family and friends I will battle on and not let NMO change me for the worse. As with any chronic illness, some days are harder than others. But I choose to focus on getting well. My mom found SRNA when I first became ill, when she was searching for information that could help educate her about NMO, so she could save me. My greatest hope is a cure for all rare autoimmune diseases, including NMO, and for all people afflicted. The Siegel Rare Neuroimmune Association deserves our support in furthering research, cures, and advocacy.
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