What do YOU see during optic neuritis?

[Crashoran]

I can't seem to find much information about what exactly people see when it happens.

When I get double vision, I can cover one eye and still understand what's going on around me. Is that the case with most people?

When I get blindness, my vision fills up with a solid dark gray, and I can't see anything at all. Sometimes there is a little bit that I can see at the very top, while everything else is "blind". Do you see black, gray, or any certain color?

[candycane]

my vision

I am officially diagnosed with MS, but haven't been officially diagnosed with ON. For the past few years, if I'm in the bright sun for a long time (especially if I am reading) my right eye gets dim--almost like I'm looking out of sunglasses on that side. So it is like a shade of brown or red is over my one eye. (this is an interesting question. I have not seen grey. I wonder if everyone is different?)

[Crashoran]

That is interesting. When I hear "blindness" i think of somebody seeing pure black, but I guess it varies.

[Dawn42]

I had a large grey spot in the middle of my vision in one eye; it was like a blotch of grey paint in the middle of my glasses. Over about 3 months, it lessened until it was gone. Now it sometimes seems like that eye sees less color, but the vision level is fine.

[Redwings]

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.

[jazzgirl]

I've had 4 diagnosed episodes of optic neuritis, one causing almost total blindness in my left eye (central scotoma). I had a LARGE black "spot" in the center of my vision. I also had excruciating pain when I moved my eyes either up/down or side to side. Thankfully, I've recovered well from all of them.

It does not sound like you're dealing with ON from your description. Have you seen a doctor about this problem?

[MandaJ]

All i saw was white. I couldnt see at all out of my left eye. no shapes, colors.. nothing. Just pure white

[bsymom]

Hubby's 1st know onset of MS was ON...he still has trouble. He's now technically color-blind. I say technically because he doesn't like to hear something is green when he sees it as it blue. We're still working on this 10 years later. He says he has 80% of his vision back, but color and space (he scares me when he drives) is still questionable.

[Crashoran]

I have had several days earlier in the year where it hurt to move my eyes around. But I thought it was attributed to too much REM movement during sleep.

@redwings. Thanks so much for the great detail. I knew I didn't have classic ON, but to hear a detailed comparison is extremely helpful. I think I have demyelination somewhere in the optic path, but not ON. I have occasional dimness and pain in the right eye, but no real vision loss. I have frequent episodes of my vision greying out it my left eye, which resolves itself within minutes. I can even 'fix' it when I get out of a hot shower by having a Popsicle. Your explanation will help me explain it to my neuro in October without feeling too crazy.

[charliesmom]

what do you see with ON

When I had ON a couple of years ago I described it as looking at a foggy bathroom mirror. I could see some shapes and it really seemed like if I could just wipe the mirror I could see what was there! As for a color I would call it light gray. I still have some residual damage and my left eye is still a little off.
-C's

[cosake]

ON got me my MS diagnosis.

I lost all of the central vision in my right eye over the course of a week. Picture waking up in the morning and looking up at the ceiling fan, and you can only see the very outside edges of the paddles -- you can't see the middle/motor at all. I had very little pain, thankfully.

My regular eye doctor had given me some drops and said it might be a "floater". I went back for follow-up and was sent to specialist who diagnosed ON and setup check for MS with neuro.

I do have one odd residual thing that I wonder if anyone else experiences (only happened after my ON) ? When I rub my right eye, it feels a little funny, and makes weird clicking noises -- like the lid is stuck to the eye more than on the left eye ?

[Bob698]

Just to further muddy the discussion.
ON hit me literally overnight. I would see some flashes in my left eye from time to time but didn't think much about it. Woke up one morning and thought I had a case of "eye boogers" but I couldn't get it to go away.
My ON has never really left. Early on, it got worse starting with the typical "looking thru cheese cloth/foggy mirror" to where I "saw" gray lumps in my field of vision. Also had what I call The Red Shift where red objects or (epecially) lights looked orange to yellowish-orange in the bad eye.
I've never had pain associated with it, besides some eye strain. As it got worse, I was able to kinda ignore what the bad eye was seeing and learned to adapt.
Over the last ten years, its gotten very slightly better. The cheese cloth is still there but I have some spots around the periphery of my vision where I can make out letters and the red shift is gone.

[bonisme40]

I've have what your describing too. I know it's not the typical op I'm not sure what it is exactly it was terrifiying at first but now that I know it comes and goes it's not so bad. I know if I get to hot it comes on immediatly. Other times when I actually lost complete sight I was just sitting on the couch and suddenly it was like my perifrial vision went first and I could see through a perfect circle in the center of my eye and it just kept getting smaller and smaller until I could see only the size of a pin head the rest was totally black...then it started coming back about 20 min. later THANK GOD!

[Redwings]

Hi bonisme40:
Neither phenomenon you've described is optic neuritis.

I know it's not the typical op I'm not sure what it is exactly it was terrifiying at first but now that I know it comes and goes it's not so bad. I know if I get to hot it comes on immediatly.

That's typical of Uhthoff's sign -- a pseudoexacerbation caused by a rise in body temperature. This is what happens when poster starry1's vision dims during a hot shower and clears up quickly after cooling of with a Popsicle.

Other times when I actually lost complete sight I was just sitting on the couch and suddenly it was like my [peripheral] vision went first and I could see through a perfect circle in the center of my eye and it just kept getting smaller and smaller until I could see only the size of a pin head the rest was totally black...then it started coming back about 20 min. later THANK GOD!

That's characteristic of an ocular migraine. The vision loss onsets over the course of minutes and also clears up in minutes. The typical time for clearing is about 20 minutes, but the episodes can be shorter or longer. Ocular migraine is frequently mistaken for optic neuritis. By definition, ocular migraine is always painless. If the vision loss includes head or eye pain, it's no longer an ocular migraine. It's considered to be a migraine with ocular phenomena.

Both of these are on the list of differential diagnoses for Crashoran' transient vision loss.