Optic Neuritis...will it ever go away?

[redhen2]

Newbie here...not sure where to post this. Diagnosed Dec. 21. It started with ON, more than three months ago. I lost half the vision in my right eye. Took the methylprednisone/prednisone taper, during which I started having these mini- seizures (for lack of a better word). Those slowly tapered off, my field of vision came back, but it's so dull/bright/washed out...and now it's getting worse. Today it looks like the room is filled with smoke - both eyes. Everything I read about ON is generic - has anyone been through this? Am I going blind?

[Skinny]

Oh yes been there twice got that T shirt and the matching koozie.
Optic neuritis (ON) I think is different for everyone just as MS is different for everyone. Mine lasted a good 8 weeks the time around. I still have a white scar on my optic nerve Drs can see just using the thingy on the wall in the office.

I believe stress can make it act up. I have a gray line though my vision all the time sometimes I get used to it others I think there is a hair or something in my eye.

I found that a cool cloth over my eyes helped sometimes. And motrin. I know it's scary and not fun but it seems as soon as you stop stressing about it it starts to go away. I have learned to live with it, however fear it will strike back at anytime. Your not alone if that makes you feel better.

[jazzgirl]

I understand your fear, redhen, and can only tell you my experience and hope it helps to calm your fears a bit.

My 2nd bout of optic neuritis brought on something called a central scotoma in my left eye. My central vision was gone! It was like the flash from a camera was still in my eye long after the picture was taken. Needless to say, it was annoying as hell and HURT when I moved my eyes in any direction. I had a boatload of IV steroids (8 consecutive days) and still no relief. I, unfortunately, took the oral taper of Prednisone, and later learned that oral steroids are contraindicated in the treatment of optic neuritis.

End of story is that it DID go away...gradually. It took one whole year for it to return to normal, but it did return! . The vision went from legal blindness (20/400) to just fine, thank you (20/30).

You're new to the nonsense that MS can bring to the table. I'm sorry that you got your diagnosis so close to the holidays, or at all, for that matter. Just give it some time to recover. It will! Try to relax, although I know it's hard to do. And welcome to MSWorld!

[Redwings]

Hi redhen:
Sorry that you're having such a bad time with your vision.

I've had recurrent optic neuritis for more than 20 years, so I've been living with the effects of ON and studying it for a long time. I've had dozens of episodes -- I stopped counting a few years ago at 50 -- so I have a lot of experience with it. I have to add here that I have neuromyelitis optica, not MS, so some of the details are different than for MS, but overall the experience is the same.

With extremely rare exception, ON comes and goes in episodes. It sounds like that's what yours did. So yes, ON does go away. But there are two things to bear in mind.

First, although the inflammation -- the "itis" -- goes away, the effects of the damage may not. (That's what makes a lot of people continually, erroneously, refer to ON in the present tense, even though the inflammation has long gone. But the effects are not ON.) The Optic Neuritis Treatment Trial (ONTT) found that most people get most of their vision back after an episode. Some people get all of their vision back, some get some back and some get none back. Some recoveries are quick and some are slow, taking months to a year or more. It's not possible to predict what's going to happen, and that can be unsettling.

Second, even though ON goes away, it can recur. Some people have one or two episodes, some people have many. Early on, it isn't possible to predict what the pattern will be. As time goes on, the pattern (even if the pattern is that there's no discernible pattern) reveals itself.

So, to answer your question about whether you're going blind, the odds are very good that you're not, but the real answer is that it's too soon to tell. After 20 years and extensive optic nerve damage, I still see remarkably well. Other folks have one or two severe episodes and don't have any recovery. But remember, most people get most of their vision back.

In MS, there's a sort of typical pattern. Half of people with MS will have at least one episode of ON during their lifetime, the other half never will. In MS, it's more common for an episode to be monocular, although bilateral episodes do occur. In MS, it's more common for a person to recover most of their vision. In MS, ON occurs with about the same frequency as any other relapse. There are presentations of ON in MS that don't follow these general characteristics.

The counterpart to that is that atypical episodes also suggest that the ON may be caused by something other than MS. ON in neuromyelitis optica (NMO, aka Devic's disease) can meet these general characteristics, but it's also common for the episodes to be bilateral and frequent, with poor recovery. NMO is frequently misdiagnosed as MS (mine was), so if ON doesn't follow the presentation that's more typical of MS, other causes should be considered.

ON can be very mild or severe, and folks here at MSWorld have -- and will -- describe a variety of presentations. (Some have also attributed things to ON that aren't related to it.) Although the generic description of ON applies to everybody (that's how it got to be the generic description), the details of the presentations can be different from person to person and from episode to episode. My episodes have been from one extreme to the other in terms of acuity, field and pain. I've had good recovery many times, but also permanently lost a good chunk of visual field in a single episode.

Both my research and experience have taught me that, once ON becomes recurrent, a person has to be especially careful about trying to prevent more episodes by being on a disease-modifying med. And although research shows that steroid treatment makes no difference in the final outcome of an episode of ON, I'm not convinced that that's true for people who have recurrent ON. (Research shows that steroid treatment can shorten the duration of a flare, so that can be a good reason to treat a severe episode of ON.)

Other conditions affecting the optic nerve have shown that, the greater the damage, the less able the remaining nerve fibers are to stand up to continuing onslaught. The damage of ON is cumulative so, in following this pattern, the more episodes of ON, the less able the remaining healthy nerve fibers are to survive repeated episodes. So I have to believe that, after a recurrent pattern becomes apparent, the more important steroid treatment becomes. I know some neuro-ophthalmologists who believe this also, so they always treat ON with high-dose steroids, whether IV or oral. (The ONTT found that ON should not be treated with low-dose oral steroids.)

If you're noticing a change in your vision -- particularly in both eyes -- it's in your best interest to call your ophthalmologist ASAP. The trouble you had during your last steroid series makes your case a bit complicated. If you are having another episode of ON, you and your doctors will have to decide how to manage it, and it's probably better that you do that before the holiday weekend.

Take care of yourself and let us know how you're doing.

[Redwings]

I had a boatload of IV steroids (8 consecutive days) and still no relief. I, unfortunately, took the oral taper of Prednisone, and later learned that oral steroids are contraindicated in the treatment of optic neuritis.

The Optic Neuritis Treatment Trial led to the warning against oral prednisone in the treatment of ON not because the drug was in oral form, but because the dose was too low. The warning was worded that way (contraindicating orals) because, at the time of the initial trial, the customary way to administer low-dose steroids was in oral form, so "oral" implied low dose. It wasn't customary to administer high doses of steroids in oral form, so high-dose orals weren't tested. If there had been a high-dose oral prednisone group in the trial, the outcome might have been different and the contraindication would have been worded differently.

And, jazzgirl, you can let go of any concern about having used prednisone to taper after your IV steroids. Not only is the oral form of prednisone not the problem, the contraindication against low-dose oral prednisone applies to using only low-dose oral prednisone to treat ON -- the customary treatment for ON at the time was a week's worth of (only) 60 mg of prednisone per day, so that's what was tested and what showed to be detrimental. The ONTT findings don't apply to an oral prednisone taper after the days of high-dose IV. In fact, the ONTT high-dose IV protocol included an oral prednisone taper (because that was also customary at the time). Your prednisone taper was OK, so you can turn your into !

[Tonya2011]

I had ON in 2008, which was my first sign of trouble. I had it for several months and eventually it went away with no treatment. I've had a couple minor flare ups since then but since I wasn't diagnosed til just 3 weeks ago, it was never treated.

[redhen2]

Thanks...

Thanks for the replies - some comfort there, to be sure. My most disturbing problem is what you mentioned - what is an ON flare-up and what symptoms are residual damage? Today it's primarily the right eye - loss of a patch of central vision.

But none of this seems to be following any particular protocol - not happening the way it "should". My doctor situation is a bad joke so far. No one wants to take me as a patient (Yes, state aid for insurance...forgive me....) and therefore are treating me with a bare minimum of effort or care, it a very "cook-book" fashion. The neuro who has me now seems okay, but not very knowledgeable, just quotes the drug company literature. It is very helpful to read what other people have experienced, even if it tells me that there are as many manifestations of this as there are people. I have SO many questions, it takes me a while to pick the most important ones...this whole thing is already a frikkin Lifetime Network Movie...