Diagnosis: Neuromyelitis Optica Spectrum Disorder
Texas, United States
In 2014, I suddenly started losing my vision. It felt like I had been out in the sun and walked inside a dark room. I had recently moved desks and my chair was facing out the window, so I picked up my entire desk and moved it to face the other direction in hopes that it would resolve. Over time, the vision issue became worse, so I went to my optometrist and she quickly sent me to an ophthalmologist. The ophthalmologist sent me for an MRI, and then I didn’t hear from him for a while.
During that time, I kept getting worse, so I finally called. They told me they didn’t feel comfortable treating me based on the MRI, and they sent me to see a neuro-ophthalmologist. The neuro-ophthalmologist told me that I had a lesion that was over my optic chiasm and treated me with steroids. At that point, he said I potentially had multiple sclerosis (MS), but I had to have multiple lesions to meet the diagnostic criteria. I saw him annually for an MRI for the next three years. I would periodically tell my optometrist that my eyes didn’t feel just right after that, but nothing ever came up on the MRI.
Almost three years to the day, in March 2017, I started feeling like my face was asleep on the left side. It started on my chin and slowly worked its way up to my forehead. I’d later find out that the sensory issues were on the majority of the left side of my body. I was due for my annual MRI, so they added some additional images and found another lesion. During this time, I was diagnosed with MS, and I went to see an MS specialist who quickly changed my diagnosis to neuromyelitis optica spectrum disorder (NMOSD). She warned me not to Google it and gave me some information.
I started Rituxan in September of 2017. Since then, I have had an attack that caused some issues with my right leg, and I’ve experienced issues with fatigue and cognitive issues. I have some odd residual symptoms, but otherwise I am definitely lucky to be where I am today. Since I was diagnosed, I went to school and got my master’s degree. I probably drive all of my doctors crazy advocating for myself and making sure that I am getting the best care that I can. Due to that, my neurologist encouraged me to help with support groups and helping others in our community with NMOSD, so I became a SRNA Support Group Leader in 2019 for the San Antonio, TX area. Sometimes living with this disease is frustrating, but in the process, it has brought a lot of good into my life. I have met amazing people and I have learned to have a more positive outlook in life. I hope that I can bring that to others who are navigating life with NMOSD or similar diseases.
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