Optic Neuritis Journey

My story begins back in 1989 as I noticed black dots in both eyes especially when I would fly and look out the window. At the time I had no pain but wondered why I saw specks that looked like a tiny little pencil dot in my peripheral vision. It would come and go over the years and after my mother died in 1992 I had a severe episode of Optic Neuritis with blurry vision and more dots in both eyes.

At the time I visited an ophthalmologist that had multiple visual field scans, but was then later referred to a Neuro ophthalmologist that confirmed I had Optic Neuritis but no confirmation on a MS diagnosis at that time. I was not a big fan of this Neuro ophthalmologist as I told her I was having symptoms of tingling in my hands and feet especially when I would drink alcohol. Her comment was “doesn’t everybody tingle when they drink.” At that time I was in my early 20s and never had any type of medical issues before so I did not come back to her office for at least six months when I had another episode.

My wonderful father lived next to an ophthalmologist who told my father it sounded like I was having classic symptoms of multiple sclerosis who referred me to a neurologist for a work out for multiple sclerosis.

What is optic neuritis? 

“Optic neuritis develops when swelling (inflammation) damages the optic nerve – A bundle of nerve fibers that Transmit visual From your eye to your Brain. Common symptoms of optic neuritis is pain With eye-movement contemporary loss in one eye.


Early on in my 20s and 30s I had episodes of optic neuritis 1 – 2 times a year. Back then I was treated with a five day course of IV Sergeant Medrol. This is a strong steroid that helps with the inflammation in your body and to help with the inflammation around the optic nerve. Taking high doses of steroids, man I was at the infusion room at my MS Center for five days in a row. During treatment I had a lot of energy and a lot of anxiety. Once I finish the course of treatment I would be anxious, angry, and I would feel extremely tired and achy. But I knew I had no other choice but to take this medication so I could not lose my eyesight.

Everyone’s symptoms are different with having optic neuritis. My chief complaint was visual blurriness and seeing black dots especially in the sunlight.

Since I have progressed into secondary progressive multiple sclerosis I have not had an episode of optic neuritis in over 10 years. I have been very grateful for this and my eyesight has been stable.

Make sure you send us questions in our blog responses below. I would be more than happy to answer questions especially for people just recently diagnosed with optic neuritis and who are a little confused by treatments. Treatments today seem to be less aggressive, IV steroids tend to be only three days versus five days back in the early 1990s. But I highly recommend finding a good Neuro ophthalmologist to collaborate with your neurologist on scheduling annual visual field exams and staying in contact with treatment plans.

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