What do YOU see during optic neuritis?

[rocky282]

Hi Crashoran:
An important thing to know about optic neuritis is that it isn't transient. That is, it does not come and go in waves, coming on and then clearing up in minutes to hours or even a day. ON onsets over hours to days and the visual effects last continuously for days to weeks to months, or remain permanently. To have dozens of episodes of blindness in one month (as you said in another thread) can happen with other conditions, but it isn't characteristic of ON.

Also, ON is usually (though not always) painful, ranging from mild to excruciating. With the dozens of episodes of transient blindness you've had, you haven't mentioned pain at all. That's not typical of ON.

Over 20 years I've had about 60 (that's 60, not 6) episodes of ON. For me, it starts with a loss of visual field outside central vision (called the midperiphery) that spreads. I permanently lost a huge chunk of visual field in one eye and have spots of field loss in the other. My field loss is spots of moderately dark gray nothingness. The spots have never been black, the way field loss is illustrated in photos and drawings. I can tell the difference between old loss and new loss (from active ON) because the active spots of gray are "glarey" when I look at a light. The glare represents inflammation. In addition, all but 3 episodes have been painful to some degree.

While my field loss starts in the midperiphery, other people lose their central vision and visual acuity first, which then spreads to take over most or all of the visual field. Other people see sparkly or flashing lights (alone or in addition to field loss). I've never seen lights to that extent, although I've had sound phosphenes and an increase in movement phosphenes, which are small circles or spots of lights. The absence or presence of lights isn't used as part of diagnosing ON. Seeing lights isn't common, and not seeing them has no significance to ON.

With the transient character of your vision loss, it might be suggested that you're having "pseudoexacerbations" (google it). Pseudoexacerbations are episodes of loss of motor or sensory function, due to internal or external heating, that can occur in demyelinating diseases like MS. However, a pseudoexacerbation can occur only when demyelination already exists. Pseudo events usually dim vision to some extent; they aren't usually blinding. To have pseudoexacerbations that blind you alternately in both eyes, you would already have to have had an episode of severe demyelination in each eye -- something that lasted for weeks in each eye (separately or together) -- so pronounced that you couldn't possibly have missed it. You haven't mentioned having any previous episode of ON that fits that scenario.

So even though you've had blinding episodes, the transience and lack of pain aren't typical of optic neuritis. It looks like you absolutely need a competent neuro-ophthalmologist -- not a general ophthalmologist or neurologist -- to evaluate you and get to the bottom of your double vision and transient blindness. Most neuro-ophths accept patients only by referral, so be sure to ask for a referral when you see the neurologist. If the neurologist can't or won't refer you for some reason, your ophthalmologist or optometrist should be able to.

I think it is odd that you say ON needs to have pain. I don't agree. I have diagnosed ON, I have had several MRI's over 2 years that show it active in both eyes, over several months each time. I have never had pain with my ON. My first episode hit me like a ton of bricks, one second I was looking out the windshield of our vehicle, the next I was looking at a big grey mass with a little light around the outside. I thank God I wasn't driving at the time. That lasted for a couple of months, but once I "recovered" from it, I had episodes of sudden and short lasting blindness whenever I got overheated or started to feel sick. It mostly looked like I was in a smoke filled room, everything was fuzzy and badly defined.

Sure it could have been a pseudo exacerbation, but when they ran MRI's the optic nerves highlighted as active leasions. One round of steroids and followup and the ON is still active and lighting up. But no pain, none. So while I respect that you have had 60 episodes, it isn't fair to assume that everyone will have pain. Much like everything else in MS, each person will experience different things. I mean the most pain from my MS is in my legs and lower back, from spacticity I think, but with as many spinal punchtures I have undergone, it could very well be from scar tissue and physical nerve damage.

[Redwings]

I think it is odd that you say ON needs to have pain.

Hi rocky:
You quoted my post, but it looks like you didn't read it thoroughly. I said:
"Also, ON is usually (though not always) painful, ranging from mild to excruciating. With the dozens of episodes of transient blindness you've had, you haven't mentioned pain at all. That's not typical of ON."

Clearly, I never said that ON needs to have pain. I clearly said that it's not always painful. Nowhere did I assume that everyone will have pain. I even said that I've had painless episodes myself.

I did say that ON is usually painful. Pain is so common that it's part of the triad of symptoms considered in making a differential diagnosis. In arriving at a diagnosis, typical presentations are considered first, then atypical. Using that guideline, I said to the original poster that dozens of episodes of transient blindness that are painless isn't typical of ON. (The OP later posted that the neurologist didn't think he has ON, and the neuro would have used standard differential protocol to arrive at that initial assessment.) That can't in any way be interpreted to mean that I said that ON must be -- or is always -- painful.

Painless episodes of ON occur; they just aren't typical. Recurrent, lingering inflammation occurs with ON; it just isn't typical. Your painless ON was atypical, as was mine. ON doesn't need to have pain. And as you can appreciate now, I didn't say that it does.

[Ryluria]

Mine started out as pain when moving my eye from left to right. Also felt like there was pressure above my eye that was painful as well. 3 days later, I lost almost all of my vision. It was gray and I couldn't see anything out of that eye. Once I was put on steroids and it started to get better, it looked like I was looking through old, wrinkly plastic wrap. My eye is almost completely healed now. The light seems a little dimmer and I can't focus with just that eye on a computer screen, but I can actually see better farther away than I could before.