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Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
I was 7 years old and after a normal school day, I noticed blurred vision in my left eye. As a very active and healthy child, this was unusual and so I went straight to my local opticians. Whilst there, I was told I had extreme inflammation in the back of my eye. They sent me straight to A&E. In the hospital, I was seen by an ophthalmologist who ordered various blood tests and furthermore, prescribed me steroid eye drops. Months passed and my vision got better, and all results had returned as negative; they took me off the eye drops.
It was then, during a swimming lesson that my grandmother noticed me limping. We went to the doctor’s office and were referred to a pediatrician at a hospital in Chester. I had an MRI scan which revealed more inflammation down my spinal chord. It was a great shock and I was hospitalized that day. Within a week, I had been transferred to Alder Hey Children’s Hospital in the neuroscience ward. Through that time, I had many tests which all came back negative. During this time, I was put on a high dose of steroids through a drip and later through tablets. I also began physiotherapy for my right leg which became very weak and kept me off of my feet for a long time. I was diagnosed with primary progressive MS and sent home.
However, I was hospitalized again after my consultant had been in touch with an NMO specialist who believed I had NMO and not MS – What a relief! I had the test for NMO and it came back negative for the Aquaporin4, and to this day, despite numerous tests, I still show up negative for NMO.
Similar to when I suffered from optic neuritis, I was reduced off my steroids and the spinal inflammation cleared. Within a couple of months however, I dramatically lost lots of weight from the steroids and became very sick – vomiting every day. It was unlike any sickness I had suffered from before. Another MRI was done which revealed a lesion on my brain and marked my 3rd NMO attack. Sadly, I was put back on those awful steroids!
During this period I began receiving treatment through a plasma exchange. After this, I began to improve and I was able to taper off steroids with no other symptoms developing.
I’m currently coming up to my 16th birthday and despite my condition affecting my mobility, I enjoy playing the piano and going to school. I am predicted high grades in my exams this summer. Furthermore, I’m aiming to go on to university to study medicine and become a doctor – maybe my NMO story has inspired me to help others! After living with NMO for 9 years, I’ve learned that not every day will be an easy right but I can make the best of the ride along the way!