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Optic neuritis :-(

Hi all, I seem to be having another flare up, since the end of last week the vision in my right eye has been getting worse, and now it’s like looking through black fog, or a very dirty net curtain. Also hurts when I move it. I was up at my 80 year old dad’s last week because he was having an operation, so phoned the ms nurse who said it could wait till Monday. When I saw the GP yesterday though she was very alarmist and cross with me for leaving it so long - what else could I have done? Anyway, I have an urgent appointment at the eye dept for this Thursday, but my understanding is they will not treat it anyway but wait for it to resolve itself. I suppose my question is, what others have experienced with ON? How do you cope? How long does it take to improve, when will I be able to see properly again? I’m already not driving after epileptic seizures (ms again:-() Thanks for any replies, Gilly xxx

Hi Gilly I had ON back in January, when I went to my local eye clinic I wasn’t given steriods as had vision in my right eye. I was told I wasn’t a candidate for steriods as both eyes weren’t affected and the only benefits to the steriods is it’s clears the inflammation quicker. I’m not sure how accurate that information I was given is but that’s what the specialist told me at the time. My vision for better after a couple of weeks it’s still not 100% odd blurry patches and slight pain when move my eye but it is a massive improvement. Take care Polly x

Hi, sorry your eyes are bad, its never muchfun. I went to a different doc as i was away from mine, and had such pain behind eyes and when looking far left or right, i was impressed he phoned neurology dept of local hosp. a few days later i lost sight. When i saw the ms nurse a week later she said steroids at the begining would have helped but as id left it 2 weeks after pain had started to see gp, (i had an eye test first so as notto waste gp time!) There was no point in steroids as already been a month. So i think sooner you get there the better. I had lost sight for about3-4 weeks but eye pain 3 weeks on top of that. I think it really varies from person to person, hope you feeling better soon.

Hi Gilly

ON is very scary! I had it a couple of years ago but by the time I got to see an ophthalmologist and was offered steriods, I was beginning to see through the grey fog, so I didn’t have them. The thick fog only lasted for about 2 weeks, but the resulting distorted vision went on for about a year and I was more aware of it when my core temperature was raised.

When it first happened, I asked my GP if I was OK to drive and he said I was (only 3 miles to work & back), but this was really scary (no 3D vision!) and I definitely wouldn’t have gone out at night.

I’m very pleased to say it did completely clear by itself - so keep the faith!

Emma xxx

Thanks for all the replies, I can’ type much because I wen tot work and it was really hard, particularly using the computer. I don’t think I’ll go in tomorrow, and hope to wake refreshed enough to reply properly. Thanks all, Gilly xxx

Hi all, Thanks again, this is a grim symptom. Different stories on steroids - my ms nurse said that current thinking, here anyway (South Wales), was that taking steroids doesn’t effect the outcome, so probably wouldn’t be offered. The eye dept seemed to say the same thing when GP spoke to them on Monday, so looks like it will be a wait and see. I did pop in for a quick chat at the neurology dept in Leicester when I was up at my dad’s at the end of last week and she was quite reassuring too. (Was very kind of her to see me as I’m not a patient up there) At least it’s only one eye, but still horrible and very tiring. I’m going to try a patch today to see if that is easier, but balance and depth perception have gone out the window. I wear glasses anyway and do find that it is restful to take them off as you say Polar Bear. Not driving anyway since having an epileptic seizure earlier in the year (MRI showed lesion on temporal lobe). I’m thinking I might be offered DMDs again now as my ms has become more active, lots to think about. Was meant to be going to Cardiff for a training day today but am crying off, I won’t be able to see the presentation anyway! Thanks again Gilly xxx

Hello again, Went to the eye clinic yesterday, with my left eye I could read the bottom line, with my right eye I couldn’t even see the chart! They confirmed optic neuritis, but how long it will take to recover? How long is a piece of string? They said no treatment, just wait and see. I will call ms nurse again today to discuss where to go next. All my other old ms symptoms are playing up too - tremor, pins and needles and pain, dodgy balance and dizziness. Feeling quite down about it at the moment to be honest. and don’t want to go back to work yet - if stress can bring It on then perhaps rest can help recovery… Thanks all, sorry for moaning but I am trying to stay brave for my family so this is the only place to be honest about it :frowning: Gxxx

Hi Gilly, I gad ON last June, 90% vision gone in 1 eye in 4 days… I did the same with the eye test… Can you read anything on the board… No because I can’t see the board!!! I went to the opticians and then straight to the hospital, they didn’t want to do steroids as apparently the side effects terrible. The hospital discharged me after 2 further visits as the eye was healthy… It was the final thing that caused the start of the MS diagnosis. My vision returned pretty much over 3 months, however is still majorly effected by the sun, a day in the sun can cause my to loose most of the vision in that eye, but will return over night the neurologist told me this wasn’t unusual. Always keep my sunglasses with me and have just got some reactive light glasses so those days where it’s bright but not glasses weather I can have glasses on. Apparently stress can cause a flare up of ON, but the. It can with most MS related things I suppose. It’s an awful and scary thing to happen, but stay positive and hopefully it will start returning again soon. Lynsey x

had hospital appointment on Tuesday and received devastating news: in my case the ON is PEMANENT+ IRREVERSABLE.

where can you go from there?

Have the scanned your optic nerve to give you this diagnosis??

yes, but actually not in the hospital where I received the latest news.

When I saw the neurologist last month and was asking him about it, (with my brain scans on the screen at the time) he was saying to me that although it was coming up 12 months ago I could still have the final improvements over another year or so as nerves take so long to heal, and the optic nerve to look at is hard to determine as whether the damage is perminant as ON is damage to the exteria of the nerve however ON also causes swelling to the nerve so to tell the difference is very hard to detect and to stay hopeful that the last of it will return. May not be the same for you, and I’m certainly not a neurologist, just relaying how it was told to me. how long have you had the ON?? Have you had any improvement?? X

I had it since January, also thought maybe it’s just taking a long time, but did not expect to hear that the dammage was so severe with no chance of improvement :frowning:

Thanks Lynsey, reassuring to know yours has improved. I’m quite light sensitive so always have reactor lenses and dark glasses anyway. Neuro has now said IV steroids next week if still as bad, but after a day taking it easy at home yesterday, (first for a while) I am beginning to see some light in rt eye so optimistic that it will improve. I think I would be able to at least read the big ‘H’ if I was tested now! Ginger that is awful, hope you get some better news soon. Gxxx

Gingerlil … Try and stay positive, they maybe wrong…nerves take a long time to heal… Everything crossed for you. G… Vision coming back was explained to me that you should at some point have a rapid improvement, then after that very slow… I thought 12months on what I am left with (which is pretty good just shorter distance and blurring at times) would be the end, but the neurologist says other wise so I’m happy to listen to him and hope!!! It’s probably the scariest thing I have had happen to me… And the missing depth perception was a nightmare walked into stuff constantly!!! But a year on I know what causes it to go again, and if it’s really sunny and I’m out for a full day… Festivals etc, I patch it up as soon as it starts to go, might look like a fool but at least it’s keeps my vision there,!! also used to patch it at the start to force my eye to rest!! Hopefully if you are starting to get improve to your on the start of the improvement curve :slight_smile: Lynsey x

Ginger I had it really bad, but here I am 13 months on and my eyes are still improving, although it’s not as quick as I’d like, but it is still happening. Fingers crossed for you Gray

Hi Grey and Lyndsey84 amd eveybody else who has given me encouraging words on this thread. THANK YOU! trying to stay positive, but to hear that my Neuritis damage is permanent + irreversable is very hard to come to terms with - in particular for an artist, a painter! however have another hospital appointment coming up next Wednesday+ will let post the outcome.

Horrible for you - vision problems are frightening and hard to deal with, I know.

How long to start getting better is the ‘how long is a piece of string?’ question. I can’t even remember in my case, not that one example would tell you anything anyway. They don’t go in for steroids for ON where I am either - I had the impression that the opthalmology department persuaded the neurology department that ON is as well left to itself as interfered with in terms of levels of recovery. I think I might have had IV steroids one of the times, but that was because my MS was going off like a firework display all over, not on account of the ON bit of it.

I hope that you are on the mend soon. It is such a lovely moment when you realise that, beyond doubt, things are going in the right direction.

Alison

Thanks, I’m definitely seeing more than I was when I was examined, it’s better first thing in the morning, and worse when I get hot, tired or stressed, so will continue to take it easy and hope that this pattern continues. All the best everyone, thanks for all the support, great to now I’m not alone, Gxxx