My NMO Diagnosis Story
I knew something was wrong for a couple of months. I kept making appointments with my doctor to discuss new symptoms that were appearing daily. First, it was searing hot nerve pain down my arms that fired up whenever I rested my arms on my desk at work. Then, my shaky legs made driving feel unsafe. I can’t remember the order, but along came the feeling of water trickling down my legs–the feeling that the floor was constantly vibrating, and deep, intense eye pain. The doctor said I was depressed – well, who wouldn't be with all of that going on?
One Monday, I was at a work conference. I noticed that although I'd been making the most of the free coffee, I hadn't been to the toilet all day. I wasn't usually the kind of person that could drink coffee without needing to pee all the time! I tried to go but nothing happened. Shortly after, I started feeling sick and the pain behind my eyes became unbearable. I excused myself and, somehow, managed to drive home.
My first hospital visit for NMO symptoms
Later that evening, I began vomiting and I went to the walk-in health center. The doctor there was perplexed, and sent me to hospital where I was admitted to the acute assessment unit. The ward was overcrowded and hectic, and the staff were trying hard to keep everything running smoothly. I stressed over and over again that I hadn't been to the toilet for the entire day. The doctor requested a bladder scan that never happened. I was pumped full of fluids through a drip, liters of saline, and eventually I managed to pass a tiny trickle of urine. I didn't realize this was overflow from a bladder fit to burst! And neither did the doctors. They were happy I'd been to the toilet, and they discharged me the next morning.
I took the bus home, and vomited again in the street outside my house. From this point on, everything is a blur. I just know that I carried on vomiting and vomiting until all I could bring up was dark green bile. A fuzzy grey patch appeared in my left eye. At first, I put it down to a migraine from throwing up so much, but then it started to spread, swallowing my vision with it.
My symptoms were terrifying
At one point, I tried to stand up and my legs collapsed beneath me. Looking down at them, crumpled unnaturally, I realized they didn't feel like my legs. They were going numb. My wife wanted to call an ambulance for hours and I kept telling her no. I was frustrated with my earlier experience and didn't want to go back to hospital. At that point, my legs collapsed I couldn't deny I needed medical attention. Still, it took hours for an ambulance to arrive, and as we waited, the vision in my right eye started to disappear too.
By the time I arrived at hospital I had developed sepsis. An infection had been breeding in my bladder and spread to my bloodstream, so I was rushed to a major hospital over an hour away for treatment at the High Dependency Unit. MRI scans revealed extensive inflammation in my spinal cord, brain stem, and optic nerve. I was barely conscious, but remember thinking, "Just don’t die before your mum gets here."
My mum arrived in the early hours and held my hand between the bars of the hospital bed. It was then I realized that I could barely see her, I had such a small amount of vision left. It was clear she was crying though. I tried to move, just to adjust my position in bed, but I couldn’t. It was like I was glued to the bed from my armpits down. The numbness was so complete, I couldn’t even feel myself gripping the flesh of my stomach between 2 fingers and pinching hard.
My NMO diagnosis
A couple of weeks later I was diagnosed with NMO and given a booklet about it. I’m glad more people are sharing their NMO stories now because back then there was so little information out there.
I can't remember how long it took for someone to tell me that I would be able to learn to walk again, and that my vision would recover too, but I remember finding it hard to believe them! With intense plasmapheresis treatment, daily physiotherapy, and the support of my friends and family, I took my first steps just 2 months later. Even my doctors were astonished! My vision returned to nearly-normal shortly after that.
That was back in 2014, and I’ve had a few relapses since then, but life is good and treatments are improving all the time.
Were you misdiagnosed, prior to being diagnosed with NMOSD?