ON?

[Shani]

Hi everyone,

I was wondering if anyone can describe what ON feels like?

Have had vision issues for about three months or so now and those include: colourvision, constant unequal and dilated pupils, slow pupils reflex, less sharp vision/blurry.

Now, I also suffer from Sjögren and SLE etc so I do often get the dry eyes as they call it...
But now I experience pain in my left eye, not sure about right but left is obvious.
And it seems to hurt if I look down to my keyboard for example and back up with my eyes to the screen.

I don't know if this could be the case as my vision is still like it was, blurry and such but not necessarily worse.
It's just the pain that worries me now, first I thought it's because from being overtired but I'm not sure-
It has been happening mainly this week, like yesterday and now.

[Redwings]

Hi Shani:
Your case is already complicated because of the pre-existing vision issues. How recently did you see last see your ophthalmologist? What did your ophthalmologist say about your vision three months ago, when you first started having problems? Your previous status is important because it acts as a basis for comparison for how your vision is now.

There are three hallmarks of ON:

1) Loss of visual acuity and/or visual field.

2) Pain on eye movement. However, some episodes of ON are painless.

3) Loss off perception of the color red in the affected eye or both eyes.

None of those is unique to ON, so it will take your ophthalmologist to determine whether your symptoms indicate ON or some other condition. In addition, since you have existing vision deficits, it might be hard for you to tell if you've had any changes. That's why it's helpful to know what your vision was like two or three months ago -- after the vision problems started but before the pain started a couple of days ago. If you've seen an ophthalmologist, your vision records will be the baseline to compare against.

Don't put pressure on yourself to try to figure this out by yourself. I don't know how the medical system works where you live or how difficult it is to contact your doctors over a weekend, so you'll have to pick the best course of action. Eye pain alone is best evaluated by your ophthalmologist, not your neurologist or other specialist. You'll have to monitor your level of pain and decide if you can wait until Monday to see your ophthalmologist. But if you have worsening symptoms that concern you, you should consider contacting your neurologist for advice.

[Shani]

Thank you very much for the response.
I don't quite see a vision change regarding blurryness worsening or so.
And the colourvision issues+less sharp vision were there abou three months ago.
I already had issues with the colour red mainly, still do now.
This just feels like some kind of pain behind the eye, first I thought a sore pain on the eye but then it started to give some pressure too and it seems to be behind or so.
Then yet I often get headaches, but this pressure is not related to it in my opinion as I notice the difference.
It's just that despite me using my eyedrops thinking it were dry eyes, it doesn't really help and continues.
it's not a sharp pain but quite annoying enough.
Also I tend to see some kind of spots shadows in my peripheral vision as I'd name it, like on the left/right when I were to stare at a certain point on a wall or anything.
It's really weird to explain but I have noticed it just recently and didn't mention.

It'd be quite hard to get by my Opthalmologist due to it being summer period now= busy.
But last time my eye exam was ok and the Optic nerve itself looked fine to her.
But I know it is hard to diagnosis ON and even afterwards when it might be 'visible' anymore..it can still have these discomforts for months or weeks.

[salamandertom]

I will just tell you what my ON is like. I would describe it as a smear a vaseline across the central line of vision that follows it whereever my eye goes. Also, my vision is pixelated. I know this may sound odd, but it is my best description. I see colors weird, like a computer screen.

Everything looks different in the affected eye, like it is further away, or a bit more disconnected. The colors are "wrong." When my ON comes back, these things get more pronounced. I did *NOT* have the pain with my first or second bout of ON. With the second bout I had a literal blind spot in my central vision.

With my third bout I had a white spot sometimes. I had pain, sometimes. Sometimes it hurt a lot. I was surprised at how much it hurt. There was always a pressure that would come and go in that affected eye - but only at the beginning of the ON bout.

I hope that helps.

[Redwings]

Hi Shani:
I have a few more thoughts about your eye pain.

And the colourvision issues+less sharp vision were there about three months ago. ...
I already had issues with the colour red mainly, still do now. ... But last time my eye exam was ok and the Optic nerve itself looked fine to her.

First, blurry vision and color vision problems are NOT normal, so it isn't possible that your last eye exam was "OK" if you had those problems then. Abnormal is not OK.

Second, 2/3 of cases of optic neuritis occur in the part of the optic nerve that's behind the eye (retrobulbar). It's possible that a raging case of ON with no useful vision left will show absolutely no signs in the little portion of the optic nerve that's visible inside the eye. The optic nerve "looking fine" doesn't mean that there isn't a major problem going on.

Third, what your doctor saw at your last visit doesn't matter much to what's going on NOW, with a new symptom. That's like saying, "I got hit by a bus this morning and I feel terrible. But I can't understand why because, when I saw my doctor yesterday, she said I was fine."

This just feels like some kind of pain behind the eye, first I thought a sore pain on the eye but then it started to give some pressure too and it seems to be behind or so. ... Then yet I often get headaches, but this pressure is not related to it in my opinion as I notice the difference. Also I tend to see some kind of spots shadows in my peripheral vision as I'd name it, like on the left/right when I were to stare at a certain point on a wall or anything. It's really weird to explain but I have noticed it just recently and didn't mention.

If you know this is different from what you've noticed before, and if it concerned you enough to ask about it on a message board (of people who can't possibly know what's causing it), why don't you want to call your ophthalmologist about it?

It'd be quite hard to get by my Opthalmologist due to it being summer period now= busy.

There's a huge difference between a routine exam and evaluating the onset of new symptoms. NO ophthalmologist should ever be "too busy" to follow up on new problems in a patient who already has vision loss -- anywhere in the world. (Remember, abnormal vision acuity and color vision are NOT "OK.") And are you too "busy" to consult your doctor about trying to save your vision?

I've had a lot of experience with vision loss and optic nerve damage from optic neuritis. I know a couple of things from both medical research and personal experience.

One is that the Optic Neuritis Treatment Trial was skewed toward ON from multiple sclerosis. It didn't address ON from other inflammatory causes, like NMO, SLE, sarcoidosis, etc. The findings for ON from MS don't necessarily apply to ON from other causes. Your ophthalmologist will have to base treatment decisions on your own particular case. I have NMO, not MS, and my recurrent ON never goes untreated.

Second, there are two ways feel about new visual symptoms. One is that, since vision is already damaged, there's no point in getting excited about new symptoms that might progress to further vision loss. If vision is going to be lost, it's going to be lost, so let nature take its course. Anyone who feels that way -- and decides on inaction -- has to remember that there aren't any "do-overs."

The other is to be vigilant about following up on every new visual or eye-related problem in an effort to head off any further vision loss and preserve every shred of vision that remains. That includes not relying on self-assessment -- which might not be accurate -- to determine whether or not it's necessary to consult one's ophthalmologist.

You're still young and you haven't had a lot of experience yet in knowing what to do about all of your health conditions and their symptoms. As someone who has had more than 20 years of experience with optic neuritis and vision loss, my best advice is for you to call your ophthalmologist ASAP and let HER determine if and when you should see her. That your ophthalmologist might be "busy" isn't a good reason not to call. Whether you're too "busy" is up to you.

[Ryluria]

For me, the pain when moving my eye started on a Wednesday, and by the weekend my vision in that eye, the left, was completely grayed out. I could see shadows if someone walked by but that's it. It happened so fast...

The pain was dull, but if I moved my eye all the way to the right or left too fast it hurt like heck. Once I was on IV steroids and my vision started to come back, it looked like I was looking through crinkled old plastic wrap or a Sepia toned photo. I still can feel a very dull, almost non-existent pain if I move my eye all the way to the side and I only notice it if I'm looking for it.