Optic Neuritis damage - How permanent?

[unwiseacts]

In June of this year I was diagnosed with Optic Neuritis. This led to subsequent findings of lesions on the brain (CIS - I guess that makes me a "Limbolander"?).

After a hospital stay, including an inpatient and an outpatient corticosteroid regimen, my vision bounced back. My concern is that there might be permanent damage. I did wait more than a week from the time I noticed a problem with my eye to the time I checked into the hospital (which isn't too bright, since I work at the hospital).

My ophthalmologist told me that whatever recovery my eye makes within the first 6 months after the episode is about as good as it's going to get. My neurologist said recovery can be up to a year, or in some cases, even longer. As it stands right now, I still have noticeable color desaturation in my right eye (especially with yellow and red, and everything looks as if it is slightly tinted blue), as well as persistent bluriness that tends to get worse around dusk.

My question is two-fold. First, in your experience, how much of a recovery, usually, does a person have during their first bout with ON (is it typical to make a full recovery)? Second, how long after the bout can I expect (even minor) improvement?

[jensequitur]

As for residual damage from ON...  After I recovered, the only thing I noticed was a black dot, sometimes flaring to white in my vision.  Rather like a magnesium flare from a welder's torch.  It took about a year for that dot to go away.  I also have a recurring problem with color vision in my right eye - colors in that eye are washed out, compared to the left.  

However, I've noticed that the dot has moved - instead of being in the lower left quadrant of my eye, now it's the upper left quadrant.  I guess this means more damage to the optic nerve.

Personally speaking, mild neurological damage takes about three to six months to heal.  More serious neurological damage can take a year or more.  Or not at all... :-(

[Lulu54]

Hi again,
As a person who doesn't care for needles or injections but picked copaxone anyway, I have to tell you I have no regrets.  

The autoinject pen that comes with the started kit makes it so you never have to see the needle, if that is your problem.  The copax needle is a 29 gauge - very thin - and most everyone will tell you that you barely feel the needle.  

Q is right - all the dmd's are about the same in effectiveness.  

I like the tool at
http://www.msdecisions.org.uk

to help you step through the differences in all the DMD's and help you to make a choice.

stay in touch, ok?
Lulu

[Quixotic1]

There are studies showing that they all are about equally effective.  

Lesions "in" the corpus callosum are highly suggestive of MS.  With those MRI findings I would be urging you to be on a DMD also.

Quixc

[unwiseacts]

Hey, thanks for the kind hello!

I have only had one bout with ON. I did have 2 MRI's done. The first one showed three abnormalities on the back part of my brain, one of which was somewhat large. The other two were small, and my neuro only noticed them upon further review, after my second MRI.

My second MRI, which was done with contrast dye, showed a much sharper picture of the first 3 lesions. It also showed that the corpus collosum had two fairly large (according to the doc) abnormalities as well. He showed me the new findings, and the MRI showed what looked like 2 lesions surrounding the corpus collosum... I'm not sure, but that's what it looked like to me. That's when he said that, if he were me, he'd take the meds. His reasoning was that, upon further review, the abnormalities were not as insignificant as he originally thought.

He said that I would do well to try to get into an MS clinic for a second opinion. I have an appointment with a somewhat well known MS doctor (she is on the advisory board for the New York chapter of the National MS Society).

My neuro told me I could look through the literature on the National MS Society's website to determine which meds would best fit me, as far as administration schedule, mainly. But he seemed to believe that Copaxone was the most effective, so I'm leaning toward that until I speak to the MS specialist this week. Also, I think I would rather do subcutaneous shots than intramuscular. At the end of the day, however, I'd like to start out with whatever is most effective.

Any thoughts?

[Quixotic1]

Hi, and another welcome to the forum.  You have gotten some good information.  I tend to agree with your neuro with regard to how long ON can continue to improve.  My take on it having read a tone of the medical literature is that it can improve as long as it improves.  The second you try to make a rule about MS you find exceptions.

Again, waiting on therapy will not change the ultimate outcome of ON.  That has been established.

Having the diagnosis of CIS is much farther along than being in Limboland.  It means that you have had one episode of an apparent demyelinating process. Actually you have had two and that takes you out of the realm of CIS.  I have two questions for you:  The fiest is whether you have had ANY other neurologic symptoms other than the ON?  The second is whether you have had an MRI and, if so, what was the result?

A classic CIS (and your is the most classic, known as an Ocular CIS) with an abnormal MRI moves WAY up on the likelihood of a future conversion to MS.  That is possibly why your doc wants to start Copaxone.  Use of a Disease Modifying Drug - DMD - has been shown to delay the onset of of Definite MS in a moderate percentage of people.  So the discussion of whether the Copaxone might be useful will be related to other symptoms you have had, any neurologic abnormalities you have on neuro exam, that all the MS mimics have been ruled out and the appearance of your MRI.

Using a DMD may not change the frequency with which you suffer ON.  However, it is your best chance - IF this is MS - to slow the accumulation of disability.  Copaxone is not the only DMD.  For example, Avonex, is also one that is the most commonly prescribed and it requires only one shot a week.  This is also something that you can discuss with the MS Specialist.

Hope this helps.

Quix

[unwiseacts]

My neuro (who does not specialize in MS) wants to put me on Copaxone even though I haven't been diagnosed with MS officially. I have an appointment on Wednesday with an MS specialist, however, and I think I'll talk to her to find out if it's really necessary.

I'm afraid to take daily shots (I'm a guy... we're afraid of needles by default), but if it helps me not go blind anymore, maybe I wouldn't mind it.

[Eyesnlegs]

I also have had 2 bouts of ON that were diagnosed. One in 1989 and one in 2004. My neuro told me that first time that they could not predict how long and to come back in 10 years and then say the damage is permanent. In other words everyone is different and the body can go on repairing itself.

It was only the 2nd bout that left me with any issues, which is good considering my first bout had me blind in one eye for 6 weeks.

Good luck and gett better soon.
Pat

[michelleric]

For me, my 1st bout of ON was 9/08 in my left eye.  No steroids were given, and my eye fully recovered within a couple of months. I had some blind spots and decreased vision but all is back.

I had 2nd bout of ON, in the right eye this time, 2/09 ( I think). At this time, by vision in that eye has lots of blind spots and still a bit of decreased vision. My neuro-ophthalmologist said it "might" still continue to get better, but "might" stay where it is at this point. I am not too happy with that, but am grateful, it is not worse.

I think it can always vary from person to person. I am on Copaxone now, and am hoping this will hold off any more ON.

Wishing you lots of luck,

Michelle

[unwiseacts]

Thank you for the warm welcome, and for the information!

Yeah, I really thought that I had made things worse by waiting. It's good to know that that's not necessarily the case.

I have not seen an improvement since a few months ago, so I'm inclined to think my eye doctor is right - whatever damage I've suffered and recovered from, this is about as good as it's going to get.

Thanks again! I'll stick around and do a lot of reading. There's a wealth of info in these posts. :)

[Lulu54]

Hi unwise, have we crossed paths yet?  I'm not remembering and want to welcome you to our forum here at MedHelp.  

I have not personally experienced ON, and hope I never will.  Yes, I'm one of those confirmed MS people without ON in my history.  

You are kicking your self for wiating to get treatment but that is something that needs to be cleared up.  With ON, regardless of whether your get IV solumedrol treatment or not, it will resolve to the same point.  It is just the steroids help to resolve the inflammation quicker.  So getting to the hospital sooner would not have made a difference as far as the lasting damage to your sight.

As for how long this will last and the recovery percentage, unfortunately there is no way to predict and each person's expeirence with ON is very different.  I hope yours concludes in a positive way.

welcome again.
Lulu