My Journey to NMOSD by Sandra Ekas

By Sandra Ekas

My story may or may not be different from others. I was not officially diagnosed with Neuromyelitis Optica Spectrum Disorder (NMOSD) until August 2017. Before being diagnosed with NMOSD, I was diagnosed with Relapsing-Remitting Multiple Sclerosis (RRMS) from 2011 to 2017. Before being diagnosed with RRMS, I went through something no one wants to ever go through. 

It started in December of 2010 as a simple cold (Rhino Virus). I was taking all the medicines possible to treat a cold but was having no success. I kept getting worse, so my mom took me to Baylor Scott & White Medical Center (Baylor). The doctors told me I had a urinary tract infection, prescribed antibiotics, and sent me home. I started the antibiotics immediately, only to have my symptoms get worse. I had a horrible headache and couldn’t function. I was screaming and crying because I felt like my head would explode. 

I went back to Baylor to have a CT scan done, more urine taken, and blood drawn. I had developed a kidney infection. This is where things got worse: I woke up in the middle of the night and the room was spinning; I was sweating but freezing cold; I started vomiting and couldn’t hold my head up. My mom rushed me to Children’s Medical Center in Dallas. I don’t know how long I slept in the waiting room before being taken back for a spinal tap. At this point, I had a fever of 103.7 that kept getting higher, so they made the room nice and cold and took my blankets away even though I was freezing! The test results came back on the spinal tap, revealing Viral Meningitis. They admitted me and started treatment very quickly. 

Now, remember when I said something happened that no one ever wants to go through? I appeared to start getting better. My mom even felt comfortable leaving the hospital on Christmas eve to finish shopping. She returned that night and I was not myself. My eyes had completely dilated. “You looked like a demon”, were my mom’s exact words. She sounded the alarms, and all the doctors came running in. They moved me to ICU. I had slipped into a coma sometime throughout the day and the doctors could not figure out why. Some of the best neurologists stepped in and started a treatment that worked. They were Donna Graves and the one and only Benjamin Greenberg! They saved my life, and I will forever be grateful. At this point, they diagnosed me with ADEM and treated it with plasma exchange (PLEX) treatments, bringing me out of the coma and saving me. 

I had a relapse in April of 2011. Dr. Graves had left, so I was just seeing Dr. Greenberg, and he diagnosed me with RRMS. Two weeks before my 21st birthday and three weeks before I started college, Dr. Greenberg called to tell me that a research trial I had participated in yielded some results. They showed that I had NMOSD, not RRMS. The treatment I was already on for RRMS would work for NMOSD as long as I kept going to my infusions every six months. 

Well, here we are almost 6 years since being told I have NMOSD. I have graduated college, got married, bought a house with my husband, got a dog, and haven’t had my infusion in 8 months because we are trying to conceive a baby. No matter how hard your journey is, there are people out there pushing for you to achieve great things. Whether it is your doctors, family, friends, or even a random stranger: do not give up because there are people who can and will help.

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