Patient Comments: Optic Neuritis - Experience


Please describe your experience with optic neuritis. Submit Your Comment

Comment from: Been here, 75 or over Female (Patient) Published: April 28

I was 10 years old when I woke up one morning with a gray hole in the central vision in my left eye. Peripheral vision was there. Normal right eye. No pain. Diagnosis was, inflamed optic nerve or neuritis. This was in 1950. I had had an undiagnosed high fever, flu or viral illness prior to this event. Pediatrician had no treatment suggestions. At the time I was out of school for 6 weeks. A Veterans Affairs nurse offered help. She gave injections of vitamin A plus antibiotics. My vision was restored 90 percent. I have scar on the optic nerve.

Comment from: Readyrdisclmr, 55-64 Male (Patient) Published: February 21

I woke up one morning after I received my shingles vaccine. My left eye was severely irritated and I had complete loss of vision in the bottom half of my eye that was grey in color. I went to the eye doctor and was informed I had optic neuritis and that my optic nerve was severely swollen. They sent me to the emergency room to get an MRI to check for stoke or multiple sclerosis. No problems found. Two days later I woke up to blurry, darkened but full range vision, unusable especially at night. I can’t read anything. It's been 3 months, and no improvement.

Comment from: Anne11054, 55-64 Female (Patient) Published: November 07

I have had optical neuritis 3 times total, and 2 times my vision was restored. The last time I lost vision. That was 6 years ago. I have been through 5 MRIs, x-rays, vials and vials of blood, sleep apnea tests, all negative. So I was diagnosed with autoimmune disease. I am taking methotrexate to prevent another episode. However, I recently had 3 of my parathyroid glands removed because of benign tumors. I am remembering that back when I first had my optical neuritis that my parathyroid blood work was high, and when redone a few weeks later it was normal. I wonder if optical neuritis and parathyroid can be related.

Comment from: emmykay, 55-64 Female (Patient) Published: February 24

I started losing the color in my left eye. I went to my eye doctor for tests. They did an MRI scan and found a small amount of swelling on my optic nerve. I started three days of IV treatments and 10 days of steroid pills. I am not sure if they helped my optic neuritis or not. I am in my fourth month and have had some improvement. I could not see the sun or colors at first, now I see things, just not the color red and everything is still a blur. My good eye is starting to have drop outs. I have faith in my doctor. I hope things get better.

Comment from: Bryan, 45-54 Male (Patient) Published: March 14

I woke up one morning with loss of vision and pain in my left eye. I"m a 46 year old male. I went to the eye doctor who diagnosed me with optic neuritis (ON). I also had other sensation issues such as slight sensation loss in my legs and my face. I went to the neurologist who gave me an MRI and found 20 to 30 lesions on my brain. Diagnosis: multiple sclerosis. After a week of IV methapred drug, I have had no new symptoms. I"m now on a pill that is supposed to reduce the number of attacks. The long term prognosis is I should live a long life but I"m to expect my brain to turn to tapioca pudding over that period. And to think, I just finished my doctorate degree.

Comment from: daughter0728, 45-54 Female (Patient) Published: May 29

If you are here looking for hope, here are some suggestions for treatment of optic neuritis. One is stem cell therapy. Second, low fat, plant based diets. This diet is particularly helpful for those with recurring optic neuritis or multiple sclerosis. My 54 year old Mom has total loss of vision due to optic neuritis with no apparent underlying causes. These are the most viable options I have found through my research and I wanted to share them to possibly help others. This is not meant to suggest a cure, only a path to research.

Comment from: needhelpfast, 35-44 Female (Patient) Published: February 27

I was diagnosed with optic neuritis on December 24th. After every test possible, and going to every specialist possible, my eye still has stabbing pain. I have gone to urgent care, emergency room (ER), and never received help other than a prescription for naproxen (Aleve). My neurologist will not write me any prescriptions for pain medications and told me to take more Neurontin and go to the ER. No doctor will write me a prescription for the pain medications I need. I have tried natural therapy, massages, holistic therapy, everything! I truly am in pain and cannot get a doctor to believe me. What do I do!

Comment from: Darla, 45-54 Female (Caregiver) Published: February 20

My daughter is having eye pain. She had sinus surgery due to strep infection. They thought it was causing pressure on the optic nerve. After 2 weeks, she is still having eye pain. Vision in her left eye has not returned. Question is whether the sinuses can cause this, or she may have another problem. After (6) doctors" opinions, we are at a loss and so are they. I believe she does have optic neuritis as one doctor mentioned. We don"t know where to take her to verify this!


The colored part of the eye that helps regulate the amount of light that enters is called the: See Answer
Comment from: jimr55411, 45-54 Male (Patient) Published: January 23

I had the first bout with optic neuritis in 2005. Many years and tests later I was thought to have multiple sclerosis and I was treated with Rebif but had no brain spots on the MRI scans. In January 2014 I had a blood test NMO-IgG. It was determined that I have Devic’s disease and always had it. I now have lung issues as well as optic neuritis and need to use a wheelchair to get around. I am now on disability at fifty and don't have a good prognosis to live. It is always a good idea to get a second opinion.

Comment from: angeleyesjess, 35-44 Female (Patient) Published: October 08

I have optic neuritis in my left eye. They could not determine the cause. I was hospitalized 4 days, had an MRI, lumbar puncture, and steroids. My vision is not better. It’s been 4 months. I get terrible, debilitating headaches, especially on left side head/eye where diagnosed. It is painful. I’m told I have to see a neurologist. I’m afraid to drive. It is horrible pain.

Comment from: Heartfriend, 45-54 Female (Patient) Published: February 18

I have relapse/remit multiple sclerosis since 2006 with infrequent flares and symptoms, but yesterday I woke up with impaired vision in my right eye. It looks grayish. I figured it is an MS issue. Then, this morning, it was worsened, so I decided to research this to determine its origin. By educating myself, I see that it is optic neuritis, most likely a symptom. It has only been 2 days. I see it will last a while. I do not medicate, which my doctor had no problem with due to the rarity and severity of symptoms.

Comment from: Loll, 45-54 Female (Patient) Published: August 05

In 1993, I had optic neuritis in my right eye, which was treated with intravenous prednisolone. Over time, my sight returned to normal. In 2003, I had it again but in my left eye; this time, no medication was prescribed and again my sight returned over a matter of weeks. I have now had my third attack, again in my right eye (2013), and I have had five days of intravenous prednisolone. This time, my sight seems to have deteriorated further after the cessation of treatment. Ten days after my release from the hospital, I have no sight in my right eye, do not feel safe to drive, and am fearful that my sight may never return. I have been diagnosed with MS, but this has been queried over the years due to the infrequency of attacks.

Comment from: scfinla, 45-54 Male (Patient) Published: March 13

I developed optic neuritis after getting encephalitis. I am advised that the damage is permanent. If noticed early on and shared with medical caregivers, I wonder if there are proactive measures to treat or ward off further damage.

Comment from: red, 55-64 Female (Patient) Published: May 06

This condition was first detected in 1999. It was treated with steroid oral tablets. The vision loss was 50% in my right eye. I had another attack in 2009 in the same eye with total vision loss. That time, I had IV steroids and I was prescribed several different antibiotics. I took these for two years with no improvement. Every six months I go for an eye checkup with visual field tests on some machines followed by an annual MRI. The latest MRI in April 2013 showed the same status – inflammation of my optic nerve. My left eye vision is OK.


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