Many of you have followed my chronicles with MS for years. In honor of MS Education and Awareness Month, I wanted to share a personal story of what it is like to go through a bout of optic neuritis. This is the true story of what happened to me in February 2006. I first posted this story on MySpace back in 2006 and it was the first blog I had ever posted. I wanted to share this with you today to bring awareness to what it is like to live through an MS relapse.
It started on a Monday. I was at the office and I noticed that concentrating on the computer screen was difficult. I was having problems differentiating colors and the typed words were blurring together into alphabet soup on the page. At first, I thought it was a problem with the fluorescent lights above me, but as the day progressed, I realized that the flickering light and blurred vision had nothing to do with the lights above. Rather, it was concentrated in my right eye.
The next day, I noticed that the center of my vision was a complete black hole with fluorescent rings of purple and orange at the outside of the black hole then fading into what seemed to be regular site. I could see through approximately a quarter of this eye. I covered my right eye and looked out of my left and noticed that my vision was perfect. It was only my right eye that was affected.
In addition to losing sight in my right eye, I had a pain associated with the eye itself. If I turned my head to the right or trained my eye in some direction other than straight, it would send a shooting sensation up into my brain and down my neck and spine. The pain had been consistent during the past month, but it was increasing now. I could no longer hide my symptoms, I had do something about it. So, I scheduled an appointment with an optometrist and they got me in right away.
I was rushed to the front of the line and immediately was placed in a dark room. The technician leaned me back and inserted dilating drops into my eyes. They ran the battery of eye tests and determined my vision was still 20/20. The next course of action was to get me to the neurologist, which happened to be less than a mile down the road. The neurologist instantly sent me for an MRI on my brain and orbits.
During the MRI, I laid as still as possible as the machine whirled and clicked. It was the same god awful noise that I remembered from the battery of MRIs I had experienced last year during my hospital stay because of my initial onset of transverse myelitis. I had been symptom free for six months, so to all of a sudden lose my vision in my right eye sent me into a panic attack. I thought that MS was behind me, but it was back and I was scared.
The phone rang at my house less than forty-five minutes after I got home. It was the neurologist saying that I had a condition called optic neuritis. Optic neuritis is an active lesion on the optic nerve which controls the eye ball. This is a condition that can be caused by an MS exacerbation or flare up. In addition to the Optic Neuritis, I was also experiencing bladder and kidney malfunction associated with the exacerbation. I had appointments scheduled for the next couple of days with the urologist in addition to whatever course of action the optic neuritis would manifest. The neurologist instructed me to go to the hospital for a three day infusion of Solumedrol, which is an IV administered steroid.
Wednesday through Friday was spent in the ambulatory care unit of the hospital from 10 in the morning till noon. Then it was a hop, skip, and a jump to the urologist for urodynamics and a renal ultrasound. My skin began to chap and crack as the steroids worked their way through my body. My beaten, bruised hands show the marks of where I was injected each day. I was experiencing so many different sensations. Steroids are powerful and have the ability to play severe tricks on your mind. I was running a high fever, my skin was dry and cracked, and I also had to continue my interferon injection on top of everything else. I wanted to break down, I wanted to cry, I needed to curse whoever was responsible for my sad shell of a life and cursed fate. So young, so strong, yet feeling so fragile and weak. I was wondering if my life would ever be the same again.
The weekend came and went. Each day my vision was returning to me a little at a time. I could start to make out outlines of objects in the room. I still had trouble going from shadows to light, but I could feel the lights being turned back on in my eye. There was a tremendous explosion of colors in small spurts as I switched from dark to light. The black hole was now alive with vibrant blurred magnificent colors. I was no longer afraid to go outside during the daytime. I was still feeling weird from the steroids, but I was encouraged that my vision was returning slowly but surely.
The initial surge of colors and lights as my vision returned still bled a blurry focus in my eye. My vision was blurry, but I somehow was seeing more clearly than ever. I went to check in at my work’s office in downtown Boston to let them know I was OK. I pulled up to my usual parking spot, got out and started walking to my building. I gazed up into the high rises and was in awe of their massive stature and vibrant colors. The architectural detail, the weather beaten brick and glass, the sun’s reflection was all so different now.
I walked the red brick and cobble stone sidewalks of Faneuil Hall and saw a man throw bread crumbs on the ground followed by a group of pigeons flying towards the feast. To see a bird in flight was the most amazing thing I had ever witnessed and I had never appreciated it until today. Today is a new day and the vision keeps improving with each passing moment, however, I will never look at life through the same eyes again.
It’s been ten years now since this event and I still appreciate every day that I can look at the world clearly with both eyes.
**Originally posted by Matt Cavallo on MS Focus Magazine at http://msfocusmagazine.org/Life-With-MS/Article?itemid=261**
Great story. I’ve found optic neuritis frustrating and scary, myself, but it’s also given me all kinds of new perspective on my senses. I posted a pic of what my recent bout with optic neuritis looked like from my perspective: https://acrossthebloodbrainbarrier.wordpress.com/2016/01/06/optic-neuritis-how-long-does-it-last/
Thanks for sharing – ON is scary and unknown to most. I just had my first relapse in 7 years and have just recovered from the steriods. Hoping it’ll be another 7 years before I have to go through it again!!!!
You last descriptions of seeing your surroundings differently brought tears to my eyes. I had it in both eyes 15 years ago. Its presentation was a little unusual so I had weeks before I went into hospital. That wonderful feeling when it seemed as if ‘the lights were turned on’ again and the room was brighter and more colourful. I’ll never forget it. I had no diagnosible MS but have suffered ill health every since, unfortunately