Many of us with multiple sclerosis (MS) have experienced vision-related symptoms, the most common one being optic neuritis. You could also have experienced optic neuritis and been told that you have a good chance of developing MS in the future.
You also could be experiencing some bizarre problems with your vision and are currently trying to figure out what in the world is going on. Clearly, many things can cause problems with vision and that you should ALWAYS get your eyes checked if you are experiencing strange symptoms. If you have the following symptoms, you most likely have optic neuritis, which simply translates to “swelling of the optic nerve.” It is important to know that optic neuritis can have different causes (and approaches to treatment), so even if you have MS and are fairly confident that you have diagnosed yourself correctly, you must see your doctor.
What Does Optic Neuritis Feel Like?
- Painful: Most people with optic neuritis (about 90%) experience pain when moving their eyes. This pain usually subsides after a couple of days, even if vision is still affected.
- Appearing Over a Couple of Days: For most people, the onset is pretty rapid, with the peak vision loss occurring within 24 to 48 hours of onset.
- Usually Only in One Eye: Optic neuritis can affect the vision in both eyes simultaneously, but this is extremely rare.
- Reduced Vision: This can take different forms and can be described as:
- Reduced light
- Absence of color
- Flashes of light when the eyes are moved, called phosphenes
- A “blank spot” in the middle of the eye, called a scotoma
How Common Is Optic Neuritis in MS?Between 30 to 40 percent of people with MS will have an episode of optic neuritis at some point. Optic neuritis is often the first symptom that leads to a diagnosis of MS. In fact, between 50 and 60 percent of people who have an isolated episode of optic neuritis go on to develop MS.
What Causes Optic Neuritis in MS?Optic neuritis in MS is caused by a lesion and the related inflammation on the optic nerve.
How Severe Can Optic Neuritis Get?During a bout of optic neuritis, vision loss in the affected eye(s) can be quite substantial – even complete blindness is not uncommon. Most people recover quite well from optic neuritis and regain their vision. However, some permanent residual loss of clarity or reduced color perception in the affected eye is common.
Uthoff’s Phenomenon: After a bout of optic neuritis, it is common to experience some loss of vision in the heat or during an infection that causes a fever. In fact, this experience can be an indication that a person had optic neuritis in the past that they may have been unaware of.
Time of Day: After experiencing optic neuritis, people may notice that their vision is better on some days than it is on others, or that they can see more clearly in the morning than they do in the evening.
Steroids or Not? High-dose corticosteroids, namely Solu-Medrol, have been shown to be effective in reducing the duration of optic neuritis, but probably have no effect on long-term vision. Over 90% of people begin to recover on their own within a month without steroid treatment. Oral steroids seem to have little benefit or even have adverse effects and should be avoided.
Long Recovery: Vision can continue to improve for as long as a year after the onset of optic neuritis, probably as a combination of swelling from the inflammation going down and remyelination.
Glasses Won’t Help: Glasses do not seem to help improve vision and may even magnify the problem. Some people find that increasing the light in the area where they are may help with residual vision problems.
Will It Recur? Maybe. It seems as if optic neuritis will recur in 33 percent of people, either coming back in the other eye or affecting the same eye again.
My ExperienceMy bout of optic neuritis came soon after I was diagnosed with MS. I happened to be overseas, working on a research project. One evening I noticed that I had what I assumed to be a tiny spot in the middle of my contact lens. Not thinking much of it, I went to bed. The next morning, there was a silver-gray area in the middle of my field of vision that took away about 25% of my vision. By the end of the day, it was bigger and by the next day, I could only make out shapes on the periphery of my vision. If I sat still and concentrated, it would seem that objects would appear out of a fog, and then quickly recede.
Fortunately, I already knew that I had MS and I knew that optic neuritis was not really an emergency in the sense that I needed to be medically evacuated. Unable to get an earlier flight, I mustered through a couple more days of important meetings, but was growing increasingly anxious due to not being able to see out of one eye in strange surroundings. In addition, it became very painful when I moved my eyes from side to side.
When I got home, I was immediately sent by my neurologist to a neuroopthamologist for an evaluation. In all honesty, the testing that was done was long, annoying and at times extremely painful and (in my opinion) much more for the benefit of the medical students in training than for me. Following a five-hour stint of testing, I was sent back to my neurologist’s office, who promptly hospitalized me for a five-day course of Solu-Medrol. I woke up on the morning following my first dose with my vision mostly restored and my pain gone.
My vision continued to improve during the course of steroids and over the next couple of months. A couple years later, I can say that the colors that I see out of that eye appear faded and I seem to have more problems focusing. Heat exposure makes this worse, including seemingly benign things like a shower that is a little too warm or standing over a hot stove for a prolonged period. In the end, I find myself reaching for the phrase that at times seems in danger of ringing false or getting worn out: “I guess it could be worse.”
Chan JW. Optic neuritis in multiple sclerosis. Ocul Immunol Inflamm. 2002 Sep;10(3):161-86.
Randall T. Shapiro. Managing the Symptoms of Multiple Sclerosis (5th ed.). New York: Demos Medical Publishing, 2007.
Chan JW. Optic neuritis in multiple sclerosis. Ocul Immunol Inflamm. 2002 Sep;10(3):161-86. Randall T. Shapiro. Managing the Symptoms of Multiple Sclerosis (5th ed.). New York: Demos Medical Publishing, 2007.