Choose Language Donate to Illuminate Contact TSF
Visit us on Facebook Visit us on Twitter Visit us on YouTube Visit us on Instagram Visit us on Linkedin

Choose Your Language:

Danish Danish Dutch Dutch English English French French German German Italian Italian Portuguese Portuguese Spanish Spanish

Kristen’s NMO Story – Changed for the Better

Posted by: The Sumaira Foundation in NMO, Voices of NMO

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.

 


Industry Partners

Community Partners

WARNING: Internet Explorer does not support modern web standards. This site may not function correctly on this browser and is best viewed on Chrome, Firefox or Edge browsers. Learn More.