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Roxy’s Story – Denial, Disbelief, and Disability

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

Hello fellow NMO sisters and brothers.

My name is Roxana aka “Roxy”. I was diagnosed with NMO in June 2011 when I was 17 years old.

The first symptom I experienced was weakness in my right ankle. I woke up one day and my ankle couldn’t sustain my weight. I thought I hadn’t slept well and was simply tired. The weakness never went away, but I kept ignoring it. Then, I got sick with the flu and my vision got very blurry. My legs began to get weak and I realized now it was both of legs. The weakness started affecting how I walked and made me the target of bullying.

Then, on the last day of school, when I woke up my whole body was numb!

This couldn’t be happening.

I was so scared. I was trying to convince myself it was nothing. I told my sister what was happening and she reached over and pinched my leg…I felt nothing.

My parents took me to the emergency room and we didn’t think it would be anything serious. It just couldn’t be! That is until the emergency room doctor told me I had multiple sclerosis. I was at a loss for words…

My parents were doing everything they could to get me the best care. My mom was constantly fighting with the insurance company so I could see the specialists at Children’s Hospital Los Angeles (CHLA). Thankfully, she was victorious and I got an appointment. At CHLA, they ran a lot of tests to see what was going on but it was the fluid drawn from my spine that would ultimately give us the answers.

It was not MS; I had NMO.

It was tough news to hear and left me depressed for many years.

Even today, I am still trying to understand this disease.

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