Everything changing at age 15

Anonymous

It all started on September 29, 2019 I had a severe headache and pain in my eyes. As a few days went by i started to realize that my vision had gotten blurry in my left eye. My mom took me to the eye doctor and they sent us straight to the ER thinking I might have a brain tumor or MS. They ran some test and I got an MRI and everything came back good.

On October 7, 2019 I had gone completely blind in my left eye all I saw was blackness. We went back to the eye doctor and they told me I had optic neuritis, then October 9, 2019 we went to a neurology Ophthalmologist and they ran a bunch of eye test and drew some blood. That same night i started Iv steroids and did that for 3 days. After I just took Oral steroids. 

On October 17, 2019 we got a call that a blood test had come back positive and that I had NMO. I was admitted to primary children hospital that night. While being there they ran many test and I was introduced to a treatment called plasmapheresis. I received this for 5 days every other day. With the treatment my vision did start to recover.

A couple weeks later I had gotten a flu shot and within 24 hours my symptoms had come back and my vision had gotten worse again. I was re admitted and then the next day I was fine and my vision had improved from the day before. December 4, 2019 I started Rituximab and I get it again on December 18 and then after that I’ll get it every 6 months.

This experience has been quite a roll coaster of emotions for both me and my family. I’ve been healthy my entire life then at 15 i found out I had something so rare. My vision has yet to fully recover and I don’t know if it will. This has been quite an experience and has opened my eyes to a lot of things and I have became very grateful for the things I have and the things I am able to do.

1 Comment

  1. Craig Klein on December 29, 2019 at 2:01 am

    Thank you for the write up on your story. It is a brave sign to share your experience, and generous for others. I have NMO too, and I hope you respond well to treatments and have a healthy, albeit new perspective, life.

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