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Optic Neuritis Recovery-advice please

Hi all, I’ve had optic neuritis in my left eye since the 21st June. It started as a blind spot with a sort of blue line going up my vision ever so often and eye pain. My eyesight gradually got worse over the following 2 weeks and 4 days until I was virtually blind in that eye. I attended my local A&E on the fourth day of it starting and then kept going back to the eye casualty as it got worse as they couldn’t give me a definite diagnosis so was in limbo really. After 5 weeks I saw the specialist consultant who eventually gave me the the 500mg per day steroids to be taken for 5 days. My eye had already started to improve by then but the consultant said I may as well have them to see if they improve things. My eyesight shot up after the steroids to the point where it is now but doesn’t seem to have improved any further for about 2 weeks or so now. I can see things out of that eye but always feel like there is a smudge over my sight and if I close my right eye I can see out my left eye but no where near as good as my right eye. Last week the consultant has told me I am now at 90% vision (it really doesn’t feel like that to me!) and may get up to 95% over the next 12 months although it will never be back to how it was as I have a pale optic nerve. I just wondered if anyone can tell me their experiences please? How long did your eye keep improving for? How is your sight now? Do you still notice it? Is it always on your mind? (it is with me). I’m really upset at the moment and it doesn’t help that the consultant said I should have been given steroids when it first started as although there is no clear evidence steroids will improve the final visual outcome it may have made a difference as mine came on over 2 weeks and 4 days before it got to the worst point so may never have got as bad as it did to cause the optic nerve damage. Anyway any advice about what else I can do to help myself with the recovery with also be greatly appreciated, many thanks

Hi

I had it in 1988, completely out of the blue and there was no mention of MS. That eye had ached for a few days and then at a friends wedding (that’s how I can pinpoint the date it happened) it was like someone was shining a bright light to one side. The following day I noticed the vision was a bit wonky and hard to focus, and in a state of panic we headed to A & E at Moorfields where they diagosed ON. What I hadn’t noticed however till they tested it, was that my colour vision in that eye had all but gone.

Over the next few days the sight went almost completely in that eye but over the next six weeks it improved sufficiently for me to go back to work. Another two weeks after that I was fit to drive again. It carried on improving over the next few months till it got as good as it is now. It’s not right, but it’s good enough. I notice it when I’m tired sometimes. I don’t think there’s much you can do except give it time but I do know that as with anything to do with eyes, it’s really important to rest a lot and not overdo it. I got addicted to Radio 4 back then as the TV was difficult to watch.

I’ve had double vision once since then, but never had ON again. Just luck I suppose…

Hope that helps

Hi Val, Thank you so much for replying with that information. Yes I’ve got the colour vision problem too. I’m trying to rest as much as possible and eat well. I know I just need to stay positive and appreciate my sight did come back at all - its just hard, thanks again

Hello there, your experience sounds very similar to mine. Mine started at Christmas 2012 and started with pain in my left eye. Over the course of a week or so my vision got gradually worse and worse to the point I couldn’t see anything out of that eye. I was off work for 2 weeks anyway for the Christmas holidays and then was signed off for a further 2 weeks after that. Although my vision was not great after those 4 weeks I was able to return to work and muddle on. I didn’t drive for a couple of months though as I didn’t feel confident. It’s now 8 months later and my left eye has never returned to normal. I too feel like I have a smudge on my eyeball. It feels a bit like smeared Vaseline or something. My colour vision is different compared to my right eye also. On my last visit to my neurologist he said it can take 2-3 years to properly recover so not to lose hope. But I think it’s as good as its going to get to be honest. I do find it’s worse when I’m tired or in really hot humid weather. The weather recently in London has been hot so my poor eye has been feeling the strain. On a good day though I don’t really notice it too much and my right eye compensates for it. All the best and here’s to some more improvement! Lisa x

Hi

I had ON in 2003. I went completely blind in my left eye. It slowly recovered, I think it took about 18 months to get back to the point where I wasn’t aware of it anymore.

I still have a pale optic disc but as far as I’m concerned my eyesight in the left eye is ‘normal’.

Like all things MS, everyone’s experience is different. I would try and not worry about it too much if you can. You could still recover full functionality in that eye.

Good Luck

Anne

Hi my experience with optic neuritis in 2008 was much the same as others only I woke up blind in that eye, quite shocked at time! Mine improved gradually but didn’t come back entirely. However last year I had my annual eye test, need glasses for PC and close work, & tried new opticians. I explained to him about my problems & he gave me a thorough test on each eye separately & together & this resulted in me getting the best glasses ever which although hasn’t taken the problems with my eye away completely has certainly helped. Research a really good optician & explain the differences in your eyes is my advice. Good luck Judy

I had it in September 2012 to the point of being all but blind and had IV steroids and my sight went completely back to normal within a few weeks.

But I got it again, albeit not as severe in March of this year. Had one day of IV steroids a couple of weeks ago but it hasn’t really done much to improve it.

Not sure if it will get better again but I can see, it’s just a bit blurred.

I don’t really pay too much notice of it anymore.

Thank you very much for sharing your experiences and giving me your advice. I’m sorry you’ve all been through this too. Annie you’ve given me hope :slight_smile: