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Hali’s NMO Story – No Disease Will Ever Wear Me Down

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

My name is Hali and I am a 19 year old Scottish Law student living with NMOSD.

It all began in August 2021 when I developed a rash on the left side of my neck. It caused extreme nerve pain in the brain when touched the area and would trigger shaking spasms. I then developed a fever, cough and constant shivering. I decided to take a PCR test to confirm that these symptoms were not due to COVID. The results came back negative. On the 16th of August, I visited a local A&E. However, they did not take me seriously and dismissed me, suggesting I was recovering from COVID even though the test came back negative. 

Things progressively got worse. The nerve pain spread throughout my whole body. Anytime anything touched me, I would get ‘attacks’ of excruciating nerve pain which emanated extreme heat. It felt like my limbs were about to burst and would leave me paralyzed until the pain decided to pass. I couldn’t keep food down for about two weeks, lost ~8kg and developed aggressive hiccups. That is when I decided to go into A&E again, and once again was sent home without any answers.

I had just started a new job a few weeks prior to becoming unwell and unfortunately, I had to quit. Just as soon as my life felt like it was settling, things fell apart and I had no idea what was going on and if things would get better. I was also contemplating dropping out of college as I had not been able to attend any of my classes and was sure that I would fail my last year.

After visiting A&E the second time, I started to lose the ability to hear, developed double vision and struggled to speak and swallow. The nerve attacks spread to my legs; it was the most painful feeling I have ever felt in my life. I could not move without triggering an attack and each attack would leave lasting damage to my muscles. Every time I tried to close my eyes to sleep, my body would jerk. I became sensitive to heat and my left hand and foot had become numb.

I could no longer function like a normal person. 

It got to the point where my hands and feet became swollen, the attacks lasted longer and were more frequent and on September 2nd, I decided to visit A&E yet again. This time, as my condition was clearly deteriorating, the A&E finally took me seriously. I was in the hospital for three weeks all together. These three weeks consisted of many blood tests, a lumbar puncture and MRI scans. 

Finally, I received some answers. Firstly, I was diagnosed with MS until tests confirmed I was AQP4 positive which is a specific antibody related to NMOSD. The MRI scans showed a high signal lesion in the right medulla and multiple lesions in my cervical and thoracic spine. I felt relieved that I finally had a diagnosis but disappointed that my life had fallen apart so quickly. My life was never going to be the same and I was never going to be the same person either. I was put on IV steroids for 5 days and my symptoms had settled down.

I left the hospital after three weeks, with muscle damage, loss of balance and also loss of hope that I was ever going to be the normal Hali again. I worked  with my physiotherapist to gain some strength back and also met with my neurologist who decided to put me on prednisolone until I was put on another long-term preventative treatment.

Currently, it’s been a struggle processing the fact this is my new normal but I have progressed a lot since leaving the hospital. I have found my balance, gained my strength back and decided against dropping out of my last year of college. It didn’t feel worth giving up and I was going to try catching up. I successfully caught up on all the work and have been predicted in achieving an A as my final grade.

Things are still hard as I don’t have the same energy as I once did. I no longer have a job. I’ve had to stop taking driving lessons and can’t go out much due to being immunosuppressed with COVID-19 still around. However, I’m grateful I can walk, talk, eat and see again.

I am still on steroids, have residual symptoms, and awaiting on my first infusion appointment. The road to recovery will be long but I’m proud of myself for getting to where I am. I couldn’t have gotten here without the help of my parents, they were the reason I had the motivation to get my life together after my diagnosis as I had two people, who genuinely loved and cared for me, rooting for me to succeed.

I still have a long way to go, but no disease will ever wear me down. I’ve got this.

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