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Donna’s NMO Story – You Are Only Dealt What You Can Handle

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

It was March 2009. I was 39 years old.

One morning, I woke up feeling significant pressure behind my left eye. I felt it mostly in the right corner of my eye, but assumed it would go away as quickly as it came. After a day or two, I thought it could be a sinus infection or even seasonal allergies causing the pressure, though I had never had issues with either in the past. I took some sinus medication hoping for relief, but alas, it did not alleviate the pressure. That’s when I realized it was time to call my eye doctor.

My optometrist ran some tests and immediately got me in to see a neuro-opthamologist. The visit with the specialist would change my life forever. After running a number of tests (including some of the same tests as the optometrist), in a matter of fact manner, he said,

” I believe you have multiple sclerosis and you’ll need to get an MRI to confirm it.”

I was stunned and in complete disbelief. I was the healthiest I had ever been in my life so how could I have MS? Worst yet was the look on my mom’s face as she sat next to me hearing what the doctor had said. To this day, I feel this situation and diagnosis hit her far worse than it has hit me. Having children of my own makes me understand how she felt.  

After several inconclusive MRI’s and many negative blood tests, no one could determine the root cause. They even tested me for NMO, but the results came back negative as well.

Fast forward four years and two more bouts of optic neuritis and I finally received some answers – a positive blood test for neuromyelitis optica! As I have read in many other patients stories, I was unsure if I should be happy to finally have an answer or sad to be diagnosed with a horrible and rare disease. 

I have been dealt several life changing events – divorce, the unexpected death of my father-in-law, and NMO – all of which I had no control over. However, NMO has been the hardest as I am a control freak. Living day-to-day and never knowing when NMO will take something away from me is frustrating BUT I have remained positive over the last 11 years and intend to remain positive.

I believe that I am one of the lucky NMO patients as I have not experienced any mobility issues like many other patients. With every optic neuritis episode, I’ve been able to regain sight with the help of IVIG and steroid treatments. The doctors have changed my day-to-day treatment from Imuran (which stopped working for me) to Rituxan infusions which has kept me symptom-free for the last three years.

As the saying goes, “you are only dealt what you can handle.”

Life is tricky. I just want to be able to continue to see my husband’s, parents’, children’s’ and someday, my grandchildren’s’ faces. And if someday I can’t, I will stay positive and handle that too.