Thinning of Optic Nerve

[Skittles]

Got my results from the neuro-ophthalmologist. I have thinning of the optic nerve. Not really sure what that means, but doesn't sound too good to me. He actually recommended that I get evaluated for MS.

Next appointment is for nerve conduction test on the 28th. Then MS specialist on the 3rd.

[22cyclist]

It can mean atrophy of the optic nerve. I have it in both eyes. Do you have any trouble seeing? I am sorry you are having to go through this. Hope it gets straighted out soon.

Let us know how it goes.

Lisa
Moderation Team

[Skittles]

Only one eye is affected. It's not too bad, just annoying. It's like having a spot on my glasses that I just can't get off. But it moves around. Been going on a couple months now.

He said nerves though, in plural. I guess I should have asked more questions but I was kind of taken off guard since when he asked if I had seen anyone else since the last time I saw him in regards to possible MS. I know my symptoms may be MS, or may be 400 other things, but to have a doctor say it really took me by surprise.

[MSer102]

People with MS have thinner nerve fiber layers than people who don't have MS. The scientists think it represents general bran atrophy and they're working on the idea that OCT eye scans can be used instead of frequent MRI's to monitor brain status because its a cheap and easy test.

The thin nerve layers in the eyes happen even in people who have never had optic neuritis. And the thinned out nerves don't have to have a noticeable effect on vision. So your ophthalmologist could very well have meant that you have thinning of the nerve fiber layers in both eyes.

The dark spot in your one eye isn't from the thin nerve fiber layer. Its from something in addition to the thin nerve layers that was bad enough to cause a problem in just that one place. The way my ophthalmologist explained it, a problem with the optic nerve that causes blind spots can cause the nerve layer in the eye to get thin because of the damage, but a thin nerve layer from MS doesn't cause the noticeable blind spots.

[meeshkap]

i have that thinning as well. They told me no big deal. It is just a base line. I have lesions in my brain but they have not changed - nor were they active when found. SO I am in limbo land. I had an LP and that was negative. but the MS person said about 20% of people have no o bands. who knows...for now they will just watch it.

[Skittles]

Thanks everyone for the replies. I emailed the neuro-opth and this is what he said.

I can't tell what it is based on the scan alone. I use it as a screening test. The right eye was affected more than the left.

I don't think it's glaucoma or optic neuritis.

He went on to say he will know more after I see the neuro.

So does the thinking mean there are most likely lesions?

[MSer102]

So does the thinking mean there are most likely lesions?

That's hard to say because there are some conditions that cause atrophy in the brain or optic nerve that are caused by general degeneration and not inflammation or lesions. So I think that's why your ophthalmologist wants to wait until you see the neuro to try to figure out what's going on.

I read an article about MS that said that even though MS has lesions there's a part of the disease that's just nerves degenerating and withering up and that's what causes brain atrophy. The optic nerve and the layer of nerve fibers in the eye are part of the brain so that's how the OCT test can show brain degeneration in MS without lesions there. But like I said there are some conditions that are just degeneration and not actual lesions.

[Skittles]

Sorry for all the questions, but so does that mean there is definitely damage to the nerve? If that is the right word. I guess what I mean is does thinning mean the myelin sheathing is damaged? And is that permanent damage? I am just so new to all this.

Thanks so much for your replies!

[MSer102]

I think that if your test results are abnormal and you have a dark spot in your vision something is damaged somewhere. Your ophthalmologist is the best person to answer about the technical stuff of what kind of damage caused your particular test results.

What I understand about the overall thinning of the nerve fibers is that it can be used as a test to evaluate nerve atrophy because the changes are permanent. My tests show atrophy but I get around pretty well. The way I look at it life causes damage somewhere in everybody. The important thing is to try to find out what happened and if there's anything that we can do to try to stop it from getting worse.

Your at the start of finding out what's going on. It sounds like your ophthalmologist should be able to tell you more about what's going on with your eyes after you see the neuro.

[Skittles]

Thanks again. So I guess only more testing will really tell them.

So this is what it feels like to be in limbo.

[Skittles]

Oh and here is the other annoying thing. I honestly can't remember if I replied to this and it just hasn't been approved yet. I am sooo absent-minded these days.

Thanks again. I guess only more testing will tell.

So this is what limbo feels like.

[Skittles]

I got a copy of the OCT scan. What do you think of these numbers?

OD:
Average RNFL thickness 80
RNFL Symmetry 89%
Rim Area 1.61mm
Disc Area 1.65mm
Average C/D Ratio 0.16
Vertical C/D Ratio 0.16
Cup Volume 0.001mm

OS:
Average RNFL thickness 84
RNFL Symmetry 89%
Rim Area 1.59mm
Disc Area 1.59mm
Average C/D Ratio 0.07
Vertical C/D Ratio 0.07
Cup Volume 0.000mm

Doesn't the C/D ratio seem low? What does that mean?

[MSer102]

For the most part you want the C/D ratio to be low. It means the the part of the optic nerve that can be seen inside the eye is nice and full of nerve tissue. A big C/D ratio usually means that some of the nerve has atrophied or died which is not what you want. It looks like your ratio is about 0.1 and 0.2 which is good. Many years ago I started out with a small C/D ratio but now after several episodes of optic neuritis it's big which is bad because it means a lot of the nerves in my optic nerves have died..

Do you have the printout from the OCT test? Is it in color? My printouts are in color and it shows what the normal range is and what's abnormal and a line through the drawing that shows where your measurement is. So it's easy to see how good or bad your measurements are.

You can google what the numbers mean. If you check out the normal ranges your numbers don't look too bad. But you'll have to ask your ophthalmologist what they mean for you.

[Skittles]

Ah, that makes sense! This stuff is so confusing to me and the neuro-opth seems hesitant to say much of anything until after I see the neuro. Although in his notes he has written "MS suspect".

I'm the kind of person that researches, and researches and researches some more. I feel like I need to understand everything and this stuff has me somewhat confused.

[meeshkap]

Well I had a follow up 6 month OCT scan the other week and it looked the same as my first - with the retinal nerve fiber layer thinning...the Peripheral vision looked al ittle worse but still sort of similar... the doc said the first test suggested "neurological involvement more anterior to the CHiasm - while the one done last week suggests involvement closer to the chiasm" her suggestion is to repeat the scan and test in 6 months again to see if there are any repeatable defect anatomical readings off of my optic nerve.
Now I read somewhere that to get a diagnosis it is enough to have optic involvement and Brain involvement.... is this true? if so what does the above results mean for me? GOing to meet my MS specialist in Seattle on MOnday...