Hali's Journey with NMOSD Part 1: No Relief, No Answers
Last updated: June 2023
I had just turned 19 two weeks earlier and was working as a soft playworker at my new childcare job. On the 9th of August 2021, unexpectedly I developed a fever. Thinking it was COVID-19, I took time off work and went for a PCR test. However, the PCR test results came up as negative. I figured it was just a common cold. What I'd learn much later was that I was experiencing my first symptoms of NMO.
I was sick and had no answers
A few days later, I developed shivers and cold sweats. After that, I developed a rash on the left side of my neck which, when I touched it, would cause severe pain in my brain and intense tremors. That is when I got worried; I had to get this checked out quickly so I could go back to work, and back to my normal routine. So, on the 16th of August, I visited the A&E (emergency room) for the first time. I waited for over 6 hours just to be told I was "probably recovering from COVID" and to "eat some salty crackers" for the tremors. I was given some antibiotics for the rash and sent home.
Things just got worse
My condition began to get worse. I lost my appetite, and was unable to keep food in my system. I ended up losing 8kg (17 lbs) in just a few days. I developed violent hiccups that would last for hours. I could not stand on my own, and my parents had to do everything for me. I could barely form a sentence without struggling. The nerve pain spread from my brain to my neck, chest, and arms. Every time I would move, I would get these "attacks" of agonizing nerve pain that would let out heat and leave me paralyzed until they ended.
I couldn't sleep
Due to the frequent "attacks" in my brain, I started to lose my hearing. At night, I would be unable to sleep because of the constant body jerks and the burning and tingling I had in my arms. I would try to sleep with ice packs on my arms and had to take cold showers almost every 30 minutes to calm the pain down. But the relief would only last for a few minutes.
My doctor didn't help at all
I decided to visit my GP (primary care provider). I explained to her what I was going through, but she didn’t seem to take in a word I was saying. She began to ask me what I thought was wrong with me. I wouldn’t visit the GP if I knew what was going on with me. She was reluctant to prescribe me any painkillers for the nerve pain until my mother explained how awful it was to witness her daughter going through this without any answers.
"It's probably all in your head"
I finally started these painkillers, but they weren’t helping. I gave my GP another call and she proceeded to tell me "it's probably all in your head." The nerve pain started to spread to my legs, I developed double vision and lost feeling in my left hand and foot. I visited the local A&E and yet again was sent home without any answers. The doctor seemed clueless.
"Was I going to die?"
What was I supposed to do? I had already suffered for three weeks without any relief. Things were just getting worse and worse, and I felt hopeless because no one was able to help me. I lost the ability to speak, swallow, hear, see and walk. I lost my independence. Was this it? Was I going to die?
Does the start of Hali's journey with NMO sound familiar to you? What similarities do you share with her?
Typically, how much time passes between attacks for you?