What I Learned From My Recent Relapse

My official journey with NMOSD began in November 2021 when I was told I am AQP4+. Over 3 years, I dealt with side effects of my medicine, being constantly in and out of the ER, paresis, heat waves, twists and turns from spasms, people ghosting me, loads of mental health issues and mountain loads of other challenges with this invisible illness.

And over the same period, I started to heal, change, and have a positive frame of mind.

Strange signs

My medicine was only down to just 1. This community and my loved ones were there for me. I had accepted my new normal, me with all my imperfections. I had found the humor within me.

But at the end of August 2024, I started having strange headaches. I knew it was similar to the first optic neuritis attack I experienced but I ignored it, thinking it must be due to tutoring my daughter. The following day I vomited which was unusual for me.

However, nothing had prepared me for what I was soon to experience one evening a few nights later.

The start of my relapse

I was fixing my room and suddenly it appeared like there was a "broken glass screen" in front of my right eye's vision. I couldn’t see. For several minutes it stayed that way. I knew it was the onset of my relapse.

The ever-so-strong me was now panicked, and panicked big time. My only thought was I have an 11 year old daughter who is completely dependent on me. More so, it was just the two of us. My parents, who were our biggest support system, had moved 60 km away. My mum needed an operation due to renal cell carcinoma (RCC), and her kidney was taken out. Now she was undergoing radiation and chemotherapy. But even with all of that, Mum was worried about me.

So I felt like I couldn’t afford to get sick or have a relapse, let alone go blind. I needed to be there for them. I was concerned more about the emotional impact it would have on my daughter and my mum than what was physically happening to me.

Vision fluctuations

After the initial "broken glass screen" in my vision, a black spot would come and go. My vision started to fluctuate at a span of 15 to 30 minutes, where I would go from partially blind to fully blind. The headaches worsened and nausea took over.

It was a race against relapse, and this time I knew how fast it would progress. I DID NOT WANT TO GO BLIND.

I was sobbing when my daughter came into my room and I told her what was happening. Her first reaction was to call "Uncle V" (my neurologist). She was told I should come straight to ER. Bluntly she told me to get ready for the hospital and book an Uber. We packed two bags for a roughly 7-day stay, and she told me, "Mom you are not going blind, you will fight back." Role switched.

Gaslighting

After reaching the ER, drama happened with googling NMO and clueless faces surrounding me. At one point an ER doctor asked me if I had suffered any emotional setback to which my daughter told them about my mom's health. They responded, well in that it case it will get better in a couple of hours.

I lost it then I screamed, I told them I was about to lose my eyes so it's not stress, it is onset optic neuritis. It's a relapse. I told them if this was not treated it would soon become atrophy and I would go blind. After 3 hours of proper medical gaslighting, I was given IV doses of Solumedrol, antibiotic and other supportive measures.

Exams

I was then shifted to a room, where the same steroid was administered for another 5 days. It was on the third day when the black patch stopped appearing in my vision. I went through a series of MRIs which showed 3 new lesions on my neck area. My brain orbit was clear. A fundus eye exam clearly showed the beginning of atrophy in my right eye. I am now on Omnacortil for my eye, which will be lowered by mid-October.

What did I learn?

I have learned so much from this relapse experience.

Warning signs

First, I told my neurologist 3 months prior that I was having major vision dysfunction, which might have been the very initial warning sign for the onset of relapse. The fundus eye exam and MRI would have been helpful back then.

Emotions

Second, my neurologist is my paternal uncle and knows about my mother's health. The audacity when I visited him and he said I hope you were not imagining things because of stress. I questioned him if the investigative medical reports were wrong, and his answer was no. So not everything happens because of emotional trauma, even though it can play a part.

Have an emergency plan

Third, your child or anyone living in the home should be aware not only of medication but also of an emergency drill. The way my daughter showed courage and resilience was above and beyond. She was prepared for what to do. So instead of panicking, she followed our code, and I am so proud of her.

Stay one step ahead

Fourth, and most important: NMO yet again proved to be an unpredictable thing. Either it will attack some organ suddenly like last year when it attacked my gallbladder; or it can give slow signs like it did this time. Sometimes we might feel paranoid about over preparing with this illness. I’d say no, we need to be one step ahead of it. Hear your body out. Shut doctors off if they are gaslighting you.

Count your blessings, be as prepared as possible, and keep smiling. Reset, readjust, and restart..don't give up.