Choose Your Language:
Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
In August 2019, while at work, I began to notice a change in my right eye. I thought it was the contacts I was wearing, so I removed them. Still, my vision felt strange. I realized that I was going blind and needed to go to an eye doctor.
The eye doctor mentioned multiple sclerosis (MS), and I got scared. I was referred to a specialist who ran a number of tests. Later that night, I received a call from the specialist who told me I had optic neuritis and would need to see a neurologist.
While waiting for an appointment with the neurologist, things were not getting better. A nurse friend of mine advised me to go to the emergency room. At the ER, they did a CT scan and confirmed I had optic neuritis. But still no treatment!
Finally, I was able to see a neurologist. I was treated with IV steroids for five days of IV steroids followed by a taper. My vision never returned, leaving me completely blind in my right eye.
The neurologist ordered more tests and told me the disease I had was NMO.
I was out of town for a new job when I had tingling and a strange feeling in both my legs. I called my brother and another friend crying, afraid I was going paralyzed – because that’s what this disease can do. I decided to go to the ER.
Let me be transparent, I was not interested in taking medication such as an Immunosuppressant.
In 2021 I found out I was pregnant. I spoke with my neurologist, who decided we’d discuss treatment after my pregnancy. I had my daughter, my third child, in January of 2022.
After her birth, I started to have eye pain in my right that wouldn’t go away. The doctor put me on oral steroids. A few weeks later, my vision began to get blurry in my left eye, which was my good eye. I was then put on IV steroids for 5 days. I cried and broke down to my father, the thought of going completely blind was devastating and heartbreaking to me for the sake of my children.
A few weeks later, I was hospitalized because I had paresthesia (numbness) on the right side of my body.
The neurology team and I decided I would start IVIG infusions.
I am thankful that there is medication available.
I am hopeful that there will be a cure.