What do YOU see during optic neuritis?

[Crashoran]

When you say pseudoexacerbation only happens when there is demyelination, is it likely I may have MS?

Even though my blindness/double vision only ranges from 2 to 10 minutes or so, I sure hope it doesn't happen for several weeks like you said because it would scare me so much.

Whenever I get the "short" attacks I pretty much go into a panic mode.

[Luongo]

Wow, I was actually just about to start this discussion! Initially, I went to a PCP (mine was busy, so went to my mother's) to discuss my symptoms, one of which was vision problems. The doctor was horrible. Said that ON only occurs in both eyes, only means double vision, and that is always painful (none of which describe me).

Mine is like a TV with a light static over it at all times... I can normally read, but long periods of reading on a computer and seeing things in the dark is problematic.

I also have huge chunks of 'floaters' over my entire field of vision (both eyes) which I haven't heard of with MS, but who knows with this crazy thing.

[aitch10]

When I have a bout of ON it looks like I'm wearing smudged glasses. I can still see - knock on wood - it just feels like I need to wipe my lenses.

[Redwings]

When you say pseudoexacerbation only happens when there is demyelination, is it likely I may have MS?

Likely? No. Pseudoexacerbation is a term that has a particular use and meaning in MS. It isn't a term that's applied to transient visual loss of unknown cause. That means that you can't arbitrarily start calling your vision loss a "pseudoexacerbation" and then assume you have MS because the term is used with MS. That's like taping feathers to a goldfish and calling it a parakeet because it has feathers.

You haven't told us anything that gives solid evidence that you've had demyelination or that your episodes of transient blindness represent Uhthoff's sign or pseudoexacerbations of a demyelinating condition like MS. You haven't said that the loss of vision occurs when your body temperature has been raised, and the severity of your blindness (while possible) isn't typical of Uhthoff's. MS is only one of the possibilities, which your neurologist will evaluate. Diagnosing MS takes much more proof than just neurological symptoms.

[Redwings]

I also have huge chunks of 'floaters' over my entire field of vision (both eyes) which I haven't heard of with MS, but who knows with this crazy thing.

Actually, a lot of people know. With rare exception, MS doesn't cause floaters. If you research floaters, you'll find that most people have them to some degree, and the vast majority of those are harmless results of normal eye anatomy and physiology -- definitely not MS.

Unfortunately, some people who should know, don't. It's shocking how many doctors -- including neurologists -- don't understand eyes or vision. Your experience with the PCP is a good example of why problems with eyes and/or vision should, whenever possible, be evaluated by an eye doctor, whether a doctor of optometry or an ophthalmologist.

[asiel1]

mine varies. My first attack was at 25, I saw nothing but black for about ten minutes.

Now I have pain, "floaters" in vision, especially if out in the sun, sometimes it is gray, other times it is just very blurry.

Of all of the symptoms associated with ON, the pain is the most bothersome. I now only have issues in one eye, so I just close the bad one and keep rolling. LOL

[Bob698]

That's a good point.
ON will show physical Sx of lesions on the optic nerve itself or in or near a visual pathway of the brain.
When the doctor is looking into your eyes, they're trying to see if the optic nerve looks like its been "bleached" (if it looks more pale than a normal eye). Otherwise, an MRI is needed.
Floaters are not MS related. Its due more to the shape of your eyes (ie, are you near or far sighted?) and where the center of focus occurs within the eye.

[cocogirl]

My bouts of ON seem to me that I am looking through a telephoto lens that is totally out of focus and it is dark grey. Lights hurt, especially sunlight, and make it totally blind. I can see somethings if the lights are out. No it's not a migraine headache. Have been asked that before. The opthamologist says that the optic nerve is involved when this occurs. Hate the pain!

[Redwings]

Just to clarify a few things:

ON will show physical Sx of lesions on the optic nerve itself ...

Two thirds of ON cases occur in the portion of the nerve behind the eye (retrobulbar) and can't be seen on visual examination of the optic nerve head. Hence the saying: the doctor doesn't see anything and the patient doesn't see anything. In addition, ON doesn't always show up on MRI, which confounds neurologists and ophthalmologists who don't understand that.

ON will show physical Sx of lesions ... or in or near a visual pathway of the brain.

By definition, ON is an inflammation of the optic nerve and only the optic nerve. If the lesion is in a visual pathway of the brain, it isn't in the optic nerve and cannot, by definition, be optic neuritis. The optic nerve is an extension of the brain, but isn't in the brain. If the lesion is only near a visual pathway in the brain, then vision isn't even involved at all, and that lesion has no place in a discussion of any visual problems or effects, let alone optic neuritis.

When the doctor is looking into your eyes, they're trying to see if the optic nerve looks like its been "bleached" (if it looks more pale than a normal eye). Otherwise, an MRI is needed.

The "bleaching" is called pallor. Pallor doesn't occur during a first episode of ON. It occurs sometime afterward and represents irreversible atrophy that is a result of optic nerve damage. If the doctor sees pallor, s/he's seeing evidence of previous damage. That evidence can't be used to determine whether there's active inflammation. When the doctor is looking into an eye, s/he is more interested in looking first for signs of an active problem, and evidence of previous trouble is secondary.

[Crashoran]

How do you know so much about this stuff?

Anyways, my appointment is Friday. Hopefully I can get a quick answer on what is causing my symptoms.

[Bob698]

The "bleaching" is called pallor. Pallor doesn't occur during a first episode of ON. It occurs sometime afterward and represents irreversible atrophy that is a result of optic nerve damage. If the doctor sees pallor, s/he's seeing evidence of previous damage. That evidence can't be used to determine whether there's active inflammation. When the doctor is looking into an eye, s/he is more interested in looking first for signs of an active problem, and evidence of previous trouble is secondary.

Whatever it means, I've got it.
As I've posted in the past, I'm not a doctor and all I can do is share my experience. Until now, I didn't know that Pallor was irreversible.

[Crashoran]

The neuro from my appointment today thinks my vision problems are symptoms from 'amaurosis fugax'. Basically, there is a clot stopping the blood from reaching the retina.

Having an MRI and MRA done on Tuesday.

Don't really know what to think. The double vision and dizziness are still unexplained. Maybe I am having blood clots to certain parts of the brain causing this?

I don't understand why I have blood clots. I've never been overweight, I'm 23, 120/70 blood pressure...

[lovejoy]

"What do i see during ON"? I see Dead people!!! just went thru ON about 4 months ago didnt affect my vision at all, but it hurt as if someone was taking a corksrew to my eyes... i am sure some of you great minds will dispute this fact that it wasnt ON cause my vision never changed. None the less. As i always say I am not a doctor but i did stay at the Holiday inn express last nite.

[jumpinjiminy]

I don't know if what I have is ON or not, since several evaluations haven't revealed any answers. But I see phosphenes and get blurred vision when my temperature goes up. I've had one episode with severe pain with and without movement. There was also an episode when an employer tried to train me to develop xrays and my eyes never adjusted to the dark room, which is a red light. I didn't see anyone for it, so have no idea if I had ON then or not.

The odd thing about mine is when I'm exposed to heat for several hours or more, my vision blurs for hours, but it doesn't start until the next morning. It used to happen right away with heat exposure. But after going through several months of no or very little blurred vision for weeks at a time, there seems to be a delay in when it happens after exposure to heat.

[Redwings]

It's important to remember that the term "optic neuritis" applies only to the active, inflammatory stage of optic nerve involvement. ON does NOT refer to just any visual problem in general in a person with MS and it does NOT refer to the signs and symptoms that remain in the aftermath of active inflammation. "Optic neuritis" does NOT refer to the fading of vision with Uhthoff's phenomenon or a pseudoexacerbation. In that respect, ON is like a car wreck in that it's an incident that happens and ends, maybe leaving lasting damage. It is correct to say, "I was in a car wreck that left me with lingering problems." It is not correct to say, "I am continually in a car wreck." Unless the inflammation is active, the correct terminology is, "I had ON (that left me with problems)," not, "I have ON (that gets worse when X happens)."