Minor Symptoms, Major Concerns

In March of 2022, I was a happily retired former marketing director enjoying working part-time at a Menards home improvement store, volunteering at a local canine rescue organization, and spending time with my twin grandkids. I was also very healthy and had never had any serious medical issues. Then the vision in my left eye went completely black. But let’s step back to the real beginning of my experience with neuroimmune disorders.

Two years earlier, I felt some pain in my left eye and had a shadow in my peripheral vision. I was constantly turning my head to see what or who was on my left side, but nothing was there. While the symptoms were only a little annoying, I decided I should see my ophthalmologist. At my visit, the doctor asked questions and performed a few vision tests but seemed puzzled. He diagnosed blepharitis, an inflammation of the eyelid. I had some doubts but left with a treatment plan.

After 10 days of treatment, my symptoms hadn’t improved. But before I could revisit the ophthalmologist, the 2020 COVID-19 lockdown happened, making a follow-up visit impossible. Over the next few weeks, my eye pain decreased and I was getting used to my little shadow. Besides, it all seemed relatively minor in the face of a deadly pandemic.

Fast forward to 2022. I was getting ready to start an evening shift at Menards and noticed my vision seemed a little blurry, but thought it was probably an issue with my contacts. To check, I tried covering each eye and realized I had no vision on the left side. When did that happen? Why hadn’t I noticed it until now? In a state of shock (and denial), I went off to work as usual.

While at work, I started to accept that I needed medical attention and called my ophthalmologist. They wanted to see me first thing the next morning. At my appointment, the doctor immediately recognized this was serious and sent me to the emergency room. Shock and denial kicked in again, but I was fairly calm as I drove myself to the hospital. After an MRI confirmed optic neuritis, I was admitted to the hospital for more tests and five days of heavy IV steroids.

Later, the hospital neurologist came by and listed possible causes of my vision loss on a whiteboard: Multiple Sclerosis (MS), Devic’s Disease (or Neuromyelitis Optica Spectrum Disorder, aka NMOSD), MOG Antibody Disease (MOG), Lupus, Sarcoid, and cancer. Of course, I immediately Googled each one and the list of potential outcomes seemed to go from bad to worse.

I had five long days in the hospital to brood about the serious impacts: paralysis, pain, muscle weakness, bladder or bowel control problems, and the possibility of losing vision in one eye. But by day five, things were looking up. I could see movement and some colors, so I was hopeful as I was discharged from the hospital. The next Sunday morning, my phone rang. When a neurologist calls on Sunday from home, you know it’s either very good or very bad news.

When he started the conversation with “I’m so sorry…” I knew which direction we were headed. My test showed that I was Aquaporin-4 positive with NMOSD, and my antibody numbers were “off the charts.” My heart sank as he referred me to one of just a few nearby neurologists with experience in this rare disorder. Before meeting the new neurologist, the vision in my left eye continued to improve but it still seemed like I was looking through a frosted pane of glass.

I spent a good deal of time searching the internet and visited the SRNA website to review webinars and podcasts about NMOSD. One question didn’t seem to have an answer: why was a 60-something male hit with a disease that overwhelmingly affects younger females? The neurologist recommended that I start treatment with Uplizna. Of course, I relied on SRNA resources to read up on the drug treatment. Fortunately, my Medicare insurance plan would cover the high cost. I began the infusion a month later and have continued with these infusions every six months.

In the last year and a half, I have not had a relapse. The skeptic in me wonders if the treatment is really working or is another, more damaging attack just waiting to happen. I’ll feel much better after I get past the two-year milestone next year.

I know I’m luckier than many other people with NMOSD. Having read many of their stories, I am overwhelmed by the bravery and spirit they’ve shown in the face of misdiagnosis, pain, and disability. Since SRNA has been such an important resource in my NMOSD journey, when I saw a request for volunteers, I quickly raised my hand. I look forward to helping SRNA with communications projects to help raise awareness for rare neuroimmune diseases and to support and inform those living with these conditions.