What it looks like to have blurred vision with multiple sclerosis

Losing Sight due to Optic Neuritis

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Back in 2006, I had a flare up of Optic Neuritis, costing me the vision in my right eye.  I previously documented this account in an old Myspace blog.  I thought this blog gained new relevancy with Jack Osbourne’s acute onset of Optic Neuritis…

A year ago at this time, I was a healthy, happily married 28 year old working my way up the ladder at a prestigious real estate development firm in Boston.  Today, I am still that happily married man climbing the same ladder at the same firm, but my health has waned.  Had this been the typical day of a typical week I would not share this story with you, but the events that transpired in my life last week were truly life altering and need to be voiced.

Monday started with a bang. I walked into the office, poured my coffee and organized my day’s agenda. I meandered through the minutia, checking every last detail of a presentation I had scheduled for later in the day.  Concentrating on the screen was difficult.  I was having problems differentiating colors and the typed words were blurring together into alphabet soup on the page.  I poured another cup of coffee in hopes that the caffeine would somehow set my mind straight.  The day goes on as usual and then I get called into the conference room.  The door closes behind me and I am awarded the most substantial promotion of my life.  I smiled, shook hands and laughed all the while my coworkers are sharing in my joy not knowing the lights were turning off in my right eye.

Tuesday started early.  I got up at 4 in the morning and walked my dog.  I could see fine in the shadow of the night.  When I got back to my house and walked inside, I was blinded by the dim light that hung in the kitchen.  I closed my left eye and tried to concentrate on the vase of wilting roses on the table.  As I stared with my right eye, 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 did the same exercise by closing the right eye and using the left and everything was normal.  I figured that if I had one good eye, that one blind eye was not going to stop me from assuming my new responsibilities.  So, I showered, got dressed, kissed my wife and headed to work.

The sun was not yet up, but my sunglasses were on.  I drove with one eye closed, switching lanes only when necessary.  I got to work and tried to concentrate on the screen.  I poured another cup of coffee, convincing myself that the caffeine would turn the lights back on.  In addition to losing site, 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 this shooting sensation up into my brain and down my neck and spine.  This was a pain of a thousand migraines, but it had been happening consistently for a month and I was not about to let that ruin my big day.  I also couldn’t hide it either.  Fortunately, I was with this firm during my first exacerbation and they have been steadfast in support of me, not only in my career but as a person.  It is an uncommon luxury in a workforce consumed by greed and competition.  I approached my coworkers with my usual joking mannerisms, but I could tell by their reactions that I needed to go see a doctor and needed one right that second.  I called my primary and she immediately set up an appointment at the eye doctor.  I got in my car, half blind with the late winter Boston sun piercing like needles through soft skin.  My windshield was a streaky, cloudy mess from the snow and salt accumulation of the previous days.  I somehow managed to not wreck my car, or anyone else’s for that matter, on the way to the eye doctor.

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.  20/20 vision despite not being able to see.  Ironic don’t you think?  The next course of action was to get me over to the neurologist, which happened to be less than a mile down the road.  I walked into the blistering sun with dilated eyes and rolled slowly down the road to the neurologist.  I phoned my wife to rendezvous at the neurology office and save me from myself on the road.  The neurologist instantly sent me for an MRI on my brain and orbits. My wife drove me over to the MRI center and I was pushed deep into the tube.  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 MRI’s I had experienced last year.  It is kind of like an emergency broadcast signal that never ends. Click, click, click the machine whirled as I somehow was able to fall asleep.  I was awoken two hours later and sent home.

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 over 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 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. Now so fragile and weak.

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.

Monday came again and I decided to go back to work.  The initial surge of colors and lights as my vision returned still bled a blurry focus in my eye.  It was ok though, I knew I could manage.  I headed into work and somehow everything looked different.  My vision was blurry, but I somehow was seeing more clearly than ever.  When I was younger, I had a blind uncle.  He has passed now, but I really would’ve liked to have had one last conversation where I could have said that I understand what it is like to look through his eyes.  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.  It also made me realize that the only thing I am truly competing for in this life is food, water, shelter and air to breathe.  It is truly an awe inspiring experience to lose site and then regain it again.  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 six years now since this event and I still appreciate everyday that I can look at the world with both eyes.

 

7 thoughts on “Losing Sight due to Optic Neuritis

  1. Thank you Matt for sharing your story.
    Gives me great hope.
    Just 7 days ago I lost all my sight gradually in my right eye.
    Diagnosed ON, had MRI also nothing else showed.
    Have been on IV steroids for 3 days. Will be going oral steroids
    As of tomorrow.
    No improvement yet in right eye.
    Fortunately am self employed selling things online
    So can still operate as long as I don,t go blind in both eyes.
    Already I have observed the differences in having one eye, I mean
    like there’s a loss and a gain somewhere.
    It’s like a transmitter is down and what it was transmitting was not all
    Good as the responses I get from strangers are far more warmer than usual.
    Even though they can not notice I have one eye down.

    I don,t know what started this, I am 49 years old.
    I suspect it may have been from skiing as I got a headache after
    Skiing when it was minus 6 degrees.
    On my right side.
    Didn’t notice at the time but over the next 6 weeks my sight in right
    Eye gradually became darker, then got another headache on the right side,
    Went to doctor for headache,
    And got sight checked and within 3 days I had no sight in right eye.

    Will let you know how it goes.

    Thanks again for your story

    1. Wow Andrew, thank you for sharing your story with me. I hope all is well my friend.

  2. Thank you for sharing your story. I am a 34 year old married mother of 2 young children and am currently in the hospital working on day 2 of my steroid transfusion for ON. This is my 2nd episode in 3 years and both times blood work and MRI came back clear. It is relieving to know that there is not a bigger problem at play but also frustrating to not know what is causing it. Both times it was after flying someplace for vacation so there may be a correlation there but we just don’t know. Glad to hear you were able to make a full recovery as I was the first time around. Hoping the same will ring true this time as well!

    1. Hey Allison, sorry to hear you are in the hospital. I can remember when I was going through this and luckily my ON hasn’t flared since ’06. You do bring up a good point, ON doesn’t necessarily mean MS. You can CIS (Clinically Isolated Syndrome). For example, I had Transverse Myelitis first and then 6 months later had ON. It wasn’t until the ON that I was diagnosed with MS, unfortunately ruling out CIS. WOW! That was a lot of acronyms. Thank you for commenting on one of my oldest blogs! I wrote this back in ’06 and posted it on Myspace (does that still exist anymore?). When I look back on it, I was really scared and it was a tough part of my life. I know you are going through this now. I wish you well in recovery and my thoughts are with you and your family.

      Take care,

      Matt

  3. hi thanks for sharing your story.
    i am at the hospital for half a month now. had my steriods twice.and some tablets. but still my vision is not fully clear its still dim dark and grey. its like am losing hope. by the way it is my second time around. im 30 now but i have my first ON 7years ago.im not diagnosed with MS my MRI,spinall fluid examination etc was negative with MS.
    i didnt expect that this would come back again. im scared because this time it might be permanent. thats why id search for someone who has the same problem. that maybe could help me feel better by reading their stories. to have hope that still even its my second time i can get back my vision back.then i came to you’re blog.

    1. Thank you for sharing your story. I hope that you are on the path to recovery from your ON relapse and that your vision is fully restored. Sending good thoughts your way and wishing you the best in your recovery.

      Take care,

      Matt

  4. Wow. So many different stories. I’m on my 3rd ON episode on about 18 months. First was after a half marathon where it slowly progressed to vision loss but recovered 100%. Second one was after a short viral sickness where i again lost vision and it came back slowly to about 90%. Now recently after another viral illness, it’s slowly getting darker. No lesions on brain. All lab work normal but have not been tested yet for a newer blood test. Never have received the steroids as I’m not sure if want to deal with the side effects and the latest studies show that long term vision recovery is the same with or without them. Ugh. Opthalmologist appointment today. Then will notify my neurologist. This sucks.

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