Kristen’s NMO Story – Changed for the Better

I am no stranger to rare diseases. At 17, I was diagnosed with Toxoplasmosis. At 22, Phyllodes tumors. Chiari Malformation I at 26. It was not until 2017, when I received the diagnosis of neuromyelitis optica that my life was changed…

In early 2014, I moved into a new desk at work. This new desk faced a huge window. I started experiencing vision changes that felt like when you walk outside on a bright sunny day and come back into a darker room. I picked all my things up on my desk and moved them to face away from the window. I thought I was staring at the sunlight too much. As time went by, more and more of my vision disappeared. I remember getting hit by closing elevator doors. I realized then that I needed to get help. I went to see my optometrist thinking that all my work on a computer had finally caused me to need glasses.

My optometrist ran some tests and told me that I needed to see an ophthalmologist immediately. She called an ophthalmologist and got me in that same day. The ophthalmologist ran more tests and sent me for an MRI. Then I heard nothing. I finally reached the ophthalmologist and he said he had never seen anything like my images, and he did not feel comfortable treating me. He wanted to send me to a neuro-ophthalmologist at the local medical school.

During the wait to see the neuro-ophthalmologist, my vision was getting worse.

I was struggling to take care of my two year-old. I could not see things when he dropped them. I could not tell if food was cooked because I could not see the colors.

I remember calling the office to see if there was a cancellation. Upon speaking to me, the doctor worked me in before normal hours. He explained that I had a lesion on my hypothalamus that was overlapping my optic chassis causing my vision loss. Since I only had one lesion, I did not meet the diagnostic criteria to be diagnosed with anything. The doctor joked “you have to have multiples to have multiple sclerosis.”

The neuro-ophthalmologist monitored me for three years before anything else came up. In 2017, I was working the largest project of my career at the time. I started to feel tingling and numbness in my face. It slowly started to spread, so I went to my primary care doctor. My symptoms made the doctor think that I may have thyroid issues; my doctor ran labs to rule these out. When all my labs came back normal, he planned to send me for an MRI. I was due for my annual checkup with the neuro-ophthalmologist. I called the neuro-ophthalmologist and asked him if he could order both MRIs at once. He called me asking if I remembered that I had a lesion in 2014. He sent me for the MRI and this time I had a lesion on my medulla. I was diagnosed with multiple sclerosis. My neuro-ophthalmologist recommended an MS specialist to discuss treatment options.

I was able to get in to see the MS specialist quickly thanks to a cancellation. She reviewed all my labs and MRIs and came back in, telling us that she did not believe that I had MS but rather something called neuromyelitis optica.

She told me not to Google it when I got home. I Googled as soon as I got home.

The office gave me some materials to read up on the new diagnosis. NMO at the time had no FDA-approved treatments and was believed to come with a 5-year life span.

I entered my diagnosis with a sense of fear of the unexpected and spent the first months trying to digest it. I attended support group meetings in Austin and connecting with others like me. I found myself looking for ways to give back. A year later, I established a support group for my area in San Antonio. I finished my bachelor’s degree in 2016 before my official diagnosis. I went on to get my Master of Business Administration in 2019. I have become a therapy team with our dog, Dolly. We volunteer with kids and the hospital. I became an Ambassador for the state of Texas for The Sumaira Foundation for NMO in 2020.

As I learn more about NMO, I wonder if my NMO started during my pregnancy. I vomited all 9 months; diagnosed with hyperemesis. Post-partum, I experienced narcoleptic episodes that were attributed to being a new parent. I still have sensory issues and occasionally feel tingling all over the left side of my body. My eyes do not work the same as before. I have also been diagnosed with mild-neurocognitive disorder.

I am surrounded by an amazing support system with my family, my boyfriend, and my son. I have accomplished so much and continue to find ways to give back to my community. Despite all the challenges that came with NMO, my life has changed for the better.