On a Tuesday morning in March 2000, I woke up to a world that looked like someone had smeared Vaseline jelly on my glasses; I couldn’t see well at all. Not yet diagnosed with multiple sclerosis (my diagnosis wouldn’t come for another five years), I had no idea what was happening. I was frightened.
My optometrist called me into the office immediately and conducted a thorough exam. From what he could see, things appeared to be OK physically.
But when he pulled out a bundle of colored pipe cleaners and asked me to identify different colors, I failed the test. My color vision was impaired. He referred me to a retinal specialist, who upon examination referred me to a neuro-ophthalmologist that very same day.
This was an emergency situation and each doctor did what he could to get me to the right specialist as quickly as possible.
By the afternoon, the blurriness had progressed to blind spots verified by visual field testing. The altered color vision was turning red to brown, orange to yellow, and pink to white. Colors faded until the world rapidly became an opaque wall of mottled grayness by Wednesday morning. The neuro-ophthalmologist ordered a brain MRI to confirm a suspected diagnosis of optic neuritis. Once the results came back, he ordered a round of high-dose oral steroids to reduce the inflammation. My vision took almost three months to return, leaving some residual dysfunction.
What is optic neuritis?
Optic neuritis (ON) is an inflammation of the optic nerve, a bundle of fibers that transmits visual information from your eye to your brain. Symptoms of ON are varied, often including pain behind the eye and different degrees of vision loss. People with ON may experience blurry vision, blind spots, a graying out of vision, or dull colors. ON can, but does not always, result in temporary blindness and usually affects only one eye at a time. ON may be accompanied by flashes of light or new floaters which should be reported to your eye doctor and/or neurologist.
What causes optic neuritis?
Common causes of optic neuritis include demyelinating diseases, such as multiple sclerosis (MS) or neuromyelitis optica spectrum disorder (NMOSD, formerly known as neuromyelitis optica or Devic’s disease). In MS and NMOSD, the immune system attacks the myelin surrounding nerve fibers of the brain, optic nerves, or spinal cord resulting in inflammation and/or lesions that disrupt nerve signals to and from the brain. If NMOSD is suspected, a blood test can help distinguish it from MS and facilitate diagnosis.
Other causes of optic neuritis may include bacterial or viral infections (e.g., Lyme disease, cat-scratch fever, syphilis, measles, mumps, herpes), other autoimmune diseases (e.g., sarcoidosis, lupus), or drug side-effects (e.g., quinine, some antibiotics), according to the Mayo Clinic.
When I had the blinding case of optic neuritis in 2000, the results of my MRI showed inflammation of the optic nerve but no lesions.
I was not diagnosed with “post-infectious optic neuritis.” I had had a severe cold during the prior weeks. The MRI helped to eliminate the other potential diagnosis suggested, which was brain tumor. Fortunately, I did not have a brain tumor.
If I have optic neuritis, do I have MS?
Optic neuritis and multiple sclerosis are closely related. Optic neuritis is the first symptom for about 20 percent of people who develop MS, but not every case of ON leads to MS. Results from the landmark Optic Neuritis Treatment Trial (ONTT) showed that 50 percent of patients with ON develop MS over a 15-year period. However, the trial also showed that only 25 percent of patients with ON who didn’t have CNS lesions at the same time (like myself) developed MS, while 75 percent who had one or more lesion developed MS.
Years later, when I was being diagnosed with MS, visual evoked potential (VEP) testing detected nerve damage from this prior case of ON. But by itself, this evidence wasn’t enough to make a final diagnosis. I still had to wait until more lesions developed and were seen on follow-up MRI scans. ON was just the first stop on the long road to diagnosis.
How is optic neuritis treated?
Acute optic neuritis is often treated with a short course of high-dose intravenous solumedrol (IVSM) or adrenocorticotropic hormone (ACTH) to speed visual recovery. A review of studies indicates that there are no treatments that improve visual outcomes in general. However, the ONTT study did demonstrate that fewer patients who received high-dose intravenous steroids followed by oral steroids developed clinically definite MS compared to patients who received oral steroids alone. Other treatments that have been studied with mixed results include plasma exchange and intravenous immunoglobulin (IVIG).
If you experience a slow or sudden change in vision, please contact your neurologist or ophthalmologist for evaluation.
See More Helpful Articles:
Balcer, LJ, Miller DH, Reingold SC, Cohen JA. Vision and vision-related outcome measures in multiple sclerosis. Brain. 2015;138(Pt 1):11-27. doi: 10.1093/brain/awu335. Epub 2014 Nov 28.
Bennett JL, Nickerson M, Costello F, et al. Re-evaluating the treatment of acute optic neuritis. J Neurol Neurosurg Psychiatry. 2015;86(7):799-808. doi: 10.1136/jnnp-2014-308185. Epub 2014 Oct 29.
Galetta SL, Villoslada P, Levin N, et al. Acute optic neuritis: Unmet clinical needs and model for new therapies. Neurol Neuroimmunol Neuroinflamm. 2015;2(4):e135. doi: 10.1212/NXI.0000000000000135. eCollection 2015.
Grecescu M. Optical Coherence Tomography versus Visual Evoked Potentials in detecting subclinical visual impairment in multiple sclerosis. J Med Life. 2014;7(4):538-541.
Halilovic EA, Alimanovic I, Suljic E, Hassan NA. Optic neuritis as first clinical manifestations the multiple sclerosis. Mater Sociomed. 2014;26(4):246-8. doi: 10.5455/msm.2014.246-2481. Epub 2014 Aug 26.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.