[NoWakes]

I lost most of my vision in my left eye last week due to optical neuritis. The neuro put me on IV Solu Medrol that started yesterday, doing in my home which is nice.

I was just wondering what people's experience with this is. Does the sight come back quickly? Totally? Usually? My ophthalmologist said sometimes it doesn't come back, but neuro said it would? Confused. And maybe a bit angry. They've been doing tests on me for several months and I've had recurrent eye issues, couldn't they have foreseen or prevented this? Grrrr.

[jprinz99]

Optic Neuritis is rather variable- from one person to another and also from one episode to another (in the same individual). Mine has always come back, but perhaps not quite as sharp. I occ. get doubled vision from short burst of nystagmus.

Fear not, for you are getting care from an eye MD and your Neuro (who hopefully tak to each other!)

[Erin524]

It's nice that they got you on IV steroids quickly. My doctors always want to make me wait for some reason.

My experience is that your vision should start to improve within a few weeks to a month after you get the IVSM. You might still be able to notice deficiencies, but usually, at least for me, the steroids work pretty quickly.

Are they giving your an oral taper to take after you're done with the IV steroids? I didnt get a taper the first time I had IVSM and the steroid crash really really really sucked.

[doydie]

From what others have said about their optic neuritis, mine must have been pretty mild. I had a lot of pain and diminished vision but no loss. I had pretty much immediate relief from it. With in three months the deficit was gone. But it may have been gone before that, that was when I was rechecked. Well, I was checked in a week and it was better.

[Lynn]

My vision greyed-out with huge blind spots, double vision, things jumping around everywhere. It was in both eyes, but more-so my left. This was one of the first set of things that led to my diagnosis, and I waited for it to resolve itself before I went to a doctor - tried a General Practicioner, optometrist, absolute panic and all kinds of voodoo magic (I was terrified I had a brain tumour or something equally nasty that would kill me).

I also had loss of bladder control, numbness, incoordination, falling and so on..and on...

That was in 2001, and I let it remit by itself. Even now though, when I look to my left, I see two of everything, and when I get out of a hot shower I can't focus on my reflection and things are fuzzy. Same applies on a hot day or when I am very tired.

So, yes, for me (although considerably better) this is permanent and I can't imagine it will ever go away. According my my neuro though, the steroids (if I had them) would not have changed the amount of damage the flare caused, only the duration of it. So the outcome would have been the same regardless.

I hope that this is totally different for you, but you know, I got used to it, and luckily, it is only a minor inconvenience (for me).

I hope this all works out well for you, and it all clears completely. Unfortunately, MS runs it's own race and all we can do is hold on tight, stay as positive as we can, and come here for support and friendship - they are a fabulous bunch of people.

Hugs

Lyn

[Erika]

I woke up one morning to my first bout of ON (and my first bout of MS) with severe pain in one eye. I was 17. It hurt to move the eye and things were blurry and dim; like trying to see through pond water.
By the next day there was only a bit of blurry, dim light in the peripheral visual field remaining.
I was given prednisone, reacted poorly to it and then was told that I'd have to wait it out.
Things began to improve on their own after a couple of weeks and within a month, all that was left was a blind spot in the middle of the visual field.

The blind spot has remained relatively unchanged for 35 years; but I've long since adapted to it, so it is only noticed when the other eye is closed. Apparently there is observable damage to the optic disc of that eye, but it has also remained stable and relatively unchanged.

Subsequent bouts of ON in that eye and the other one over the years have mostly presented as blurred vision, moderate pain, sensitivity to light, dimness, flashes and floating spots of phosphorescent light and droopiness of the eye lid/eyebrow. These symptoms usually last for periods of between 2-4 weeks.
There haven't been any more episodes of blindness since that first go round and the symptoms of the subsequent bouts have resolved on their own.

Any of these symptoms can come up when I am in a flare or if under stress, including if the body gets fatigued or over heated; but they resolve fairly quickly once the stress is dealt with.
It is often my first hint that an 'MS mutiny' is brewing on board when the blind spot gets larger and/or when any of the other visual symptoms come up.

My late husband often used to notice a drooping eyelid even before I noticed a visual disturbance, and would jokingly say in a scratchy pirate voice,
"Aye...you settin' out to sea, Billy?"
Then we would both do what we could to make "Billy's" journey as pleasant and as short as possible.

Relax and keep your sense of humour NoWakes...this too will pass .

With love, Erika

[SallyC]

I only had ON once in my 48+ years with MS and it was not painful. Lasted about a month and the vision was like looking through vasaline with some double vision too. It resolved itself with no meds and It never came back. When I hear the pain and all that others go through, I consider myself lucky indeed.

I hope it doesn't leave any permanent loss of sight for you and gets better soon.

[bknejones]

All of my "medical madness" (thats what I call all of this :P ) started with Optic Neuritis. 3 weeks after giving birth to my second son I started getting pain when I would look up, down, left, right. And within 3 days I was completely blind in both of my eyes. I'm not sure if it's just the area I live in or if I was just a rare case, but none of the doctors I saw could figure out what was wrong with me. They first treated me for pseudo tumor, realized it wasn't that, then FINALLY after 2 months of complete blindness I was referred to a MS specialist who started me on IV solu-medrol. I got 3, 5 day courses of it and they told me the damage to my optic nerves were so bad that I would most likely not be able to see very well again. But after the third course had fully taken effect my vision had gotten fully restored. I believe the solu-medrol is the BEST thing that could be given for the optic neuritis, if it weren't for me getting those 3, 5 day courses I wouldn't be able to see my kids and everything else!

[NoWakes]

THanks all. The neuro is putting me on an oral taper after the 5 day IV. The pain in my eye is still bad, and the vision is the same, but here's hoping. It could be worse. I have been told that I have been having symptoms for the past few decades, but I've ignored a lot of them, well actually I had kept getting told that things like my leg not working was anxiety. I've only become severely symptomatic over the past two years. This eye stuff is icky though. I can handle pain, but this is just yucky. I keep walking into walls and tripping over things. I have had several bad falls over the past year but now I can't navigate even at home.

Glad to have the feedback. Thank you.

[Lynn]

Fingers crossed and hoping that all goes well with the steroids and that you start to feel much better soon.

I remember thinking that I was never going to feel 'normal' again - it took a long time, and maybe I have forgotten what 'normal' really felt like - but things did improve a lot. Sure it is a roller-coaster, but you learn to appreciate the good when it is there.

Lyn