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Maureen’s NMO Story – NMO & My Life

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

This disease began with hiccups and vomiting 25+ times a day. I was certain that I had gotten food poisoning or had the flu. Later, I learned that things would get much worse before they got better.  I could no longer work because it was difficult for me to even get out of bed. After the dizziness and vomiting appeared to slow down, I went back to work only to be throwing up at work.

I woke up to fuzzy eyes and a terrible headache but passed it off as a migraine. I tried to sit still at work but I couldn’t sit for much longer; my mom picked me up and my coworker had to escort me to the care because I couldn’t see anything. I went to urgent care where the doctor instructed me to get an MRI immediately. The next day, I got an MRI and went straight to hospital per doctor’s orders. When I arrived, the doctor asked to see my MRI scans. He came back within 10 minutes and told my mom that he had already called the ambulance and I needed to get to Buffalo General Hospital (BGH) immediately as I was having a stroke. 

I am 33 years old – what do you mean I’m having a stroke?

I arrived at the hospital and was greeted by several medical students and residents (BGH is a teaching facility) and later, I met the man who saved my life. I had another MRI done except this time, it was six hours. Upon returning to my room, I met my doctor who kindly introduced himself and then explained why I had lost all vision in the right eye, “you have a disease called NMO or Devic’s Disease.” How could this happen? I was running four miles a day, eating healthy, and preparing to run my first 5k marathon! What made this news even worse was what followed – he told me that I’ll likely never recover full vision in my eye.

I spent the next week in the hospital where I started IVIG right away. I was finally discharged with what seemed to be a long road ahead of me working with occupational therapists and correcting my vision. I was home for about a week and just couldn’t get enough sleep.  

One morning, I woke up to go to the bathroom and I couldn’t move my legs; there was literally no feeling. I went back to the hospital that I went to after my first MRI. This is when I met Dr. Biance Weinstock-Guttman, a true legend in her own right, who knew this disease inside and out. She knew exactly what needed to happen and I trusted her wholeheartedly. She visited me every day and assured me that things would get better. However, after a few days of treatment and still no feeling, she grew worried.

I started plasmapheresis, continued IVIG, and began Rituxan. During this time, I met Dr. Channa Kolb, my neurologist. She was patient, loving, kind, and her primary focus, was to take care of me. She assured me that she was going to remain vigilant and do everything she could so that I could walk and see again but informed me that there is a chance that I wouldn’t be able to. On the last day of this hospital stay, I received Rituxan which was a serious game-changer. The team said that it would take about a month for the drug to take effect and for me to notice a different but honestly, I was able to see the very next day! The months follower proved to be long and grueling. I didn’t know what was going to happen or who I’ve become. 

My family and I were terrified and I felt so alone. During this time, my amazing son motivated me and showed me unconditional love despite how I looked and felt; he kept me going.  

Let’s fast forward to now: I have returned to work, I am working out, and even going to school! My doctors are always so shocked every time they see me and my remarkable progress and I have their commitment and diligence to thank for it. I have been free from all of this for a little over year. Although we don’t know what my future looks like or if I’ll ever relapse, you better believe I am celebrating my life every day!

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