James’ NMO Story – Bumpy Road to a Diagnosis

Hello, my name is James. I am 24 years old. I am a recent college graduate, a skateboarder, a geek, a lucky dude with an amazing family and friends. If you don’t get the opportunity to let me bore you by telling you about those things, you could probably look at me and just assume I was a regular guy.

Before Christmas 2019, I was a rather a healthy individual. I never went to the hospital for anything nor did I ever really get sick. Life in my book was perfect and I was living it exactly how I intended. For reasons unbeknownst to me, my body turned on me and participated in “New Year, New Me” without my permission. Since then, my life has changed quite a bit.

What you’re about to read is my journey trying to find answers through many doctors, hospitals, and diagnoses to finally getting one with neuromyelitis optica spectrum disorder…

I can’t pinpoint an exact date of when all of this really started happening to me though I do wonder if symptoms started earlier and I just never noticed. The first time I noticed was Christmas night in 2019. For whatever reason, I could not go to sleep, I could not be comfortable, and had a weird sense of uneasiness as I tried to get to bed. This feeling of uneasiness was nothing like I ever felt before. It wasn’t like a sick uneasiness but more so like a gut feeling of impending doom. It was Christmas after all; I should have been jolly!

This is not something I have seen talked about or read about when shared among other NMOSD patients but plays an important part in my story – When I woke up the next morning after barely getting any sleep, I realized that a small gray dot had formed on my left eye. The dot was small, but was disrupting my vision quite a bit. I tried rubbing it to see if something was stuck in my eye but nothing came out. I was at an altitude at the time making it reasonable to have dry eye. I was 5200 ft higher than usual so I brushed it off as altitude sickness that sometimes visitors to the area experience.

The next day, I woke up and noticed that this dot was growing and I felt really tired. I also kept taking my jacket off and putting it back on as the temperatures seemed to really bug me. I kept thinking that it must have been altitude sickness or maybe I had a cold. I ignored it. I had a 7-hour drive back to California ahead of me and couldn’t let that psych me out on the road. When I got to my sister’s house in Orange County, I was so tired yet I couldn’t get to bed. I told them about my eyes and they agreed that it was likely due to altitude sickness. Made sense. “I’ll get better,” I thought.

I had another 5-hour trek to make and left early in the morning to avoid traffic. I woke up to worsened vision and I the colors in my left eye were different as they appeared in my right eye. I was still able to drive but had I looked only out of my left eye, I wouldn’t have been able to stay in the lanes. I reached home safely and didn’t have to return to work for a couple of days. It seemed like a good opportunity to rest up and heal whatever was going on. I was eager to feel better already! 

Things did not get better.  I was losing vision every hour. That weird uneasiness crept back and got worse. I was scared. After a couple days of being by myself and basically not being able to navigate around my house, I went to the emergency room. After lots of tests, the emergency doctor could not find anything wrong with me. He told me that I was going to need to see an eye doctor and sent me on my way. I called the next day to make an appointment and had to wait three days. 3 days of this before an answer!? I had hoped it would get better without the aid of a doctor.

The eye doctor examined me and recommended I see an ophthalmologist to check my optic nerves. Frustrated that I wasn’t given an answer, I made another appointment and went home. I waited another three days during which my vision got even worse. I wore sunglasses at this appointment as it helped cut down the glare from all the lights around me. I was uncomfortable and sensitive to light. I went from being unable to see anything in the dark to being completely blinded by any sort of light. I could barely look at my phone, something I reckon someone my age wouldn’t be able to live without. 

I made it to my next appointment eager to find an answer. As with the last appointment, I left without any answers and even more scared than I already was. The doctor said that my optic nerves were inflamed, “It could be MS.”

MS? Is that what’s been going on? What is going to happen to me? Will I regain my eyesight? I was off to the hospital, in an Uber with my eyes dilated, where the doctor ordered labs with hopes of getting to the bottom of this.  I sat quietly in the car, wearing light protective glasses because of the dilation. The Uber driver looked over at me and asked if people treated me differently because of my condition. I’m pretty sure he assumed I was blind. I reassured him it was just that my eyes were just dilated. This quick exchange however, triggered more questions in my head and the fear grew worse. Is this my new normal? If no one can figure out what’s wrong, is going blind my fate?

The blood test results would take about two weeks to return. I didn’t have an appointment for another two weeks. My vision got worse with most of the visual field being taken over in my left eye and my right eye slowly starting to get affected. It was like I was looking at the world through the ocean and the sun reflected right above me through it.

I went back to the emergency room. When I got there, I found the same doctor I had been taken care of previously. We had to figure out what was going on and narrow down a diagnosis. I was desperate for answers and would do anything to figure out what was going on. I had a lumbar puncture which quickly ruled out MS, a brain MRI to rule out a brain tumor, and got admitted with worsening symptoms. I was unsure of what think of all of this; how could they not know what was going on? 

I hung out for a day hoping that doctors would figure it out. The night after I was admitted, I had an MRI of the spine in which they found a small lesion. I started IV steroids which was to be administered every other day for the next 10 days. 

A couple of days after being in hospital #1, a doctor who I had never seen before walked up to me. He had an idea for a diagnosis based on my symptoms and the other things that they could rule out,

“James, you have Devic’s Disease. Your spine and optic nerves are being attacked. This is going to leave you blind and paralyzed within five years.”

He mentioned a lot of other morbid and terrible things, most of which I learned later, are not true. I have a vivid memory of him that plays in my head, “James, you are never going to skateboard again.” I could NOT believe what I was hearing. Was this a death sentence? What was going to happen to me? Why was this happening to me? I did not believe what was going on and quite frankly, I don’t think the doctors way of explaining the diagnosis was the best way to handle it. I was left without any explanation and basically told that I was going to die. I never cried harder in my life. 

Soon after, I met with the neurologist who was in charge of my treatment plan. He told me that things are not yet set in stone. The test results still needed to come back and the IV steroids were likely to initiate the healing of my eyes and spine. My vision never fully recovered. In fact, it stayed cloudy for the most part. I had no idea what to think. I actually couldn’t think at all. I was discharged after 10 days and returned the next day to receive IV steroids as an outpatient. I received my treatment, left with optic neuritis and transverse myelitis diagnoses, and was to return in two weeks for a follow up with the neurologist. 

Later that day, I visited a good friend of mine, whose cat is near and dear to my heart. I’ve heard that animals can sense when humans are sad or sick. The cat didn’t leave my side and wouldn’t get off of me. I slept really well that night but things did not continue to go so well shortly after.

I headed to Los Angeles to be close to my family. Everything seemed to be going okay though my vision appeared cloudy. I had second guessed myself that time based on my neurologist telling me not to worry and that everything would be okay. I stopped sleeping again and this time, stopped eating. The third night in LA, my vision worsened again. How could that be? I received the treatment the doctor recommended so why would it get worse? The second guessing and worsened vision continued the next day. I went to sleep that night and woke up to a familiar feeling of uneasiness and a new strange feeling on the right side of my body. This new sensation felt like burning mixed with pins and needles. My mom took me to the emergency room. I walked fine and vision was okay. The doctors in the emergency room told me that the sensations were my nerves healing from the first attack. Feeling somewhat relieved, I went home but the uneasiness persisted. 

The next day, my left foot and leg felt strange. Not weak but achy. I called the neurologist who reassured me that it was nothing major and alongside my burning feeling, I should be healing. The next day, I could barely move that leg and couldn’t sleep for three days. Something was definitely wrong. I tried everything to sleep but could not sleep for more than 20 minutes. The following day, I couldn’t stand up by myself without any help and the pain in the right side of my body became very painful. I was unable to use the bathroom properly and things were not working as strongly as before. My vision returned to a state where I could not see much in front of me. Back to the emergency room I went where they immediately pumped me with IV steroids and ordered more imaging. Once again, I was admitted to the hospital. 

Apparently, there was still inflammation in my spine and on my optic nerves and new lesions appeared on my spine. Terrifying but the doctors caring for me had seen this before and have had patients with similar symptoms. they were in touch with a doctor at another hospital who specialized in disease like this. The doctors discussed treatment plans and that I’d receive IV steroids for another four days.

It was then when I learned about plasmapheresis (PLEX). The idea of being hooked up to a huge machine and getting my plasma filtered out of my body was frightening and something I had ever heard of before. Having a tube stuck deep into my neck was not something I looked forward to but I was desperate to regain my vision and walk again. I went to the surgery center and had a catheter placed in my neck. This was really scary especially for someone who had never been to a hospital for anything before. There was a huge difference at this hospital that I will always remember. The medical team were caring and compassionate, answered all my questions, and most importantly, assured me that I was being taken care of. 

This time around, my vision returned especially likely because IV steroids were administered every day instead of every other day. I looked out the window of my hospital room and could see! Planes in the sky, leaves on the trees, and buildings were not dark shapes anymore. I was so happy that I almost cried. Everyday, I’d wake up with more mobility in my legs. I went from not being able to move it all to being able to walk around after the second PLEX treatment. The burning was going away and the pins and needles sensation became more subtle. Things continued to improve in the hospital and I learned a lot about NMO and MOG. I still couldn’t believe how I began feeling normal again – as if none of this ever happened. I spoke to many doctors each day who checked in on me and told me that i was making strides. I wasn’t sure what to think. Yes, it’s great that I’m recovering BUT there was still something wrong with me. What did my future hold? Understandably, I was still freaked out by what the doctor from hospital #1 told me… my eventual death in five years.

After the fifth PLEX treatment, I was eager to get the catheter removed. I was so excited to finally be leaving the hospital to go home. I went back to the operating room where the catheter was removed and finally looked over my right shoulder. The freedom to move around in any direction as much as I wanted to was amazing. As I was about to sign off,  I began sweating profusely and my heart rate jumped to 160 beats per minute. I was put on oxygen and given a CT scan to make sure everything was okay. “What now?” Apparently, my body had a vagal response to the catheter removal and sent me into a weird episode of shock. After about an hour, my body stabilized and I was able to go home. Finally.  

I’ve now been out of the hospital for two months and met many amazing doctors who specialize in illness like this. I am still learning about the weird new things my body is experiencing from the damage while under attack. I have learned so much and met some many wonderful people in the NMO community. I haven’t felt that uneasy feeling in my head either! I have even gone skateboarding again! 

Although it is early on in my journey, I am not going to let this awful disease stop me from living my life and being the best person I want to be. Sure, I’ll have to live a bit differently than I imagined and maybe that plan is going to keep changing. Whatever the course may be, the silver lining is that I’ve realized how beautiful life is. You never know how good it feels to go to the bathroom on your own after you barely could. You don’t realize how beautiful leaves are or someone you love is until your sight is taken from you. Every day is a wonderful gift. It’s not easy to experience something like this and operate as if it never happened. Had it not happened, it’s possible I would have never valued the beauty in this world or realized how lucky I am. 

I feel fortunate to have found such an amazing community of people, all working together to help each other out. Without that, I would have never been able to share my story like I am right now. Sharing my journey is a great opportunity to raise and spread NMO awareness to those who are unfamiliar with the disease. While relatively short compared to others, it felt like long time to get a proper diagnosis. In my opinion, too long for anyone having to deal with this.

I am grateful there is a platform to share my story that can potentially help patients who are misdiagnosed and/or did not receive the correct treatment when they should have. Maybe my story will help someone who doesn’t know what is going on with their body and it can spark looking into their symptoms from a doctor. 

This disease does not know who it is messing with because it’s going to hear from me before I hear from it again. 

To anyone reading this going through something similar, just remember, there is always hope. People love and care about you. Advocate for yourself. Do your own research. Reach out to others and learn from their experiences. Thank you Sumaira for letting me share my story, my wonderful mother and sister for doing everything in their power to take care of me, and all my wonderful friends for supporting me.