Optic Neuritis. What Was Yours Like?

I’m awaiting MRI results for optic neuritis. hoping for answers soon but wondering if anyone else’s experience looks like mine to give me some hope of my vision returning to normal one day. Can anyone who’s had it tell me what it looked like to them?
Mine looks like everything has been bleached, text is so pale it’s almost translucent and for the beginning I had a kind of hole/smudge in the centre of my vision. It looked a bit like when a camera flash goes off in your eyes and it’s trying to readjust…it just doesn’t.


My experience of optic neuritis was very much the same. I lost colour, had blurry vision and experienced flashing (especially at nighttime). My vision has virtually returned to normal now, still feels a little blurry and I still have some sensitivity to bright lights occasionally, but all colour is back and the flashing has stopped. It took maybe 2 months for the colour to come back, and another month or so for the flashing to decrease.

I hope this helps to put you at ease.

The first time I had optic neuritis, I lost colour vision and everything was very blurred. It cleared up of it’s own accord within a couple of months.

The second time I had optic neuritis, I had severe pain linked to eye movement and phosphenes galore. It took the best part of 18 months for my vision to get back to normal.

First Time I had Optic Neuritis was in my right eye and I woke up one morning and could see absolutely nothing at all. ZERO. ZILTCH, NOTHING. It was a saturday and I got emergency Dr appointment who later admitted she thought I was faking it until she saw me. I got sent to the hospital who had a look and decided that it was the MS and OPtic Neuritis. It took several months to start coming back and I have been left with permanent blindness in that I cant make out very much with that eye. Colours are muted and do vary day 2 day. That one has been 25 years so not going to change for the better. I still worked and carried on - just couldnt drive until I got used to it. Yes it hurt, quite a bit at times.

My left eye went a few years later again completely. This caused me severe issues because of the lack of vision in my right eye. I had 2 small children, lived away from our families, husband worked as sales rep and had to be out early/back late with occassional stay aways although he avoided those whilst i was bad. I could get no help from social services nor NHS - I was basically stranded. Trying to deal with two young people - one with ADHD and the other with ASD. I couldnt see what I was cooking them. They were too young to say whether something was cooked at the time. If I did sandwiches and they distracted me I had to feel all the bread to see if I had put any spread on it. Trying to hang washing out was a task and a half as was everything. I obviously had to stay off work and also not drive. That one came back fairly well thankfully. There is residual damage but eventually I was able to drive again and return to work.

Then we moved house and bought a brand new house - the stress of all that was wrong with it and living on a building site with 60 lorries a day bouncing past the house and starting at 5.30am with them all chatting on phones, engines running ect - sent me a tad dolally and affected my eyesight.

I could still see but just not focus very well on anything. Double vision from one eye. Not able to read, use computers very well and had to stop driving again. This was not classed as optic neuritis but more to do with the eyes being so damaged by the ON and my existing eyesight weakness (I wore glasses anyway) BUT they struggled to find prescription that would help me for very long. It would be about 2 months where I could manage a bit more and then slip back. Eventually 8 years later and some hefty prisms, varifocals and tolerance of new life with inadequate eyes at times I was able to start driving again. I couldnt go back to work as by now my fatigue and other MS issues had taken more promenance.

Nowadays — I have glasses - still varifocals with prisms. I cant read a book. So can use audio books. Since lockdown I have really seriously struggled with computers and zoom. I believe I am going to need glasses just with the full bottom section in for computer work — I have been told it cant cure the issues I have of blurring, patchiness, double vision ect but may help in a zoom meeting or two.

To be honest I struggle to read the tv guide even on a 55" tv. My wee bedroom TV doesnt stand much of a chance and I cant watch a film in there anymore or certain programmes as I cant see the faces or allmovements. Even on big tv I often rewind if I need to catch something.

Do I let this stop me: NO

OK I cant go out to work as not reliable enough but I can volunteer so I do. I volunteer in numerous roles within the MS Society both locally and nationally. I am a Parish Councillor - most documents are enlargable on screens and if I cant handle it then I just say so. I am part of a new WI set up last month which should be fun. I am Treasurer for a community group and on various committees.

Yes my day is restricted as to what I can do and when - yes its a pain (literally) but often there are ways round it eventually.

Losing your eyes is hard - not going to deny that - ever. But it has given me opportunities too that I definately wouldnt have taken on if it wasnt for MS and it affecting my eyes.

Plushpear you really sound like you’ve been through it and managed so much with so much visual impairment. I completely appreciate how hard that must have been with your children, I have a very little one too. Really good to know once you acclimatised you could still drive and there are ways to push on when things don’t improve as hoped.

Thank you for being so honest with your experience and so positive in how you’ve acclimatised to such difficult and severe changes to keep the good going in life. I really appreciate you taking the time to share what it’s been like for you and helps keep me grounded in what I’m experiencing to take it as it comes.

Hi eastendgirl. I had to google phosphenes and that’s just what I’m trying to describe with the ‘after camera moment’ or like you’ve just rubbed your eyes but your vision won’t settle. That must have been a tough 18 months. Mine started with really horrible pain moving my eyes in any direction. The pains better now other than looking up which is hard work. Thanks so much for letting me know what happened with yours. It’s been hard being in limbo not knowing if it’s going to get worse or better.

Emmie thanks so so much for the
reply. It gives me some hope, I’m about 6 weeks in. It started in one eye and resolved quite quickly but then returned in my right eye so much worse. When I’m on my feet all day especially in this heat it seems so much worse. I’m so glad yours has almost gone back to normal. So scary when it’s your eyes!