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Optic Neuritis

Hi everyone. I have had ON for over 14 weeks now, in both eyes. I was on steroids a few weeks ago which seemed to help my eyesight settle down quite abit, but now my eyesight is again really bad. I have double vision, blurred vision, peripheral vision is very poor too. I have optholomologist again on Thursday and I see the Neurologist on 3rd July. Anyone else had ON in both eyes? and has it affected your eyesight permanently? I am quite scared that this has gone on for such a long time now that my vision is going to be like this forever. My optholmologist is a lovely man but he speaks so quickly and with such a strong accent that I dont always understand him. I am going to ask him if I should have more steroids as the 3 week course I had did help. My GP has told me I should not drive as my insurance wont cover me should I have an accident… which brings me on to another question… do I need to phone my insurers to tell them I have ON? Im quite worried that I wont be able to drive at all and will be forever stuck in my house now!

Thanks people xx

I think you only have to tell your insurer nd DVLA if you have ms. Being told by the doctor not to drive will invalidate your insurance if you did drive. Once the doc gives you the ‘all clear’ for ON ask the question if you can drive again,if he / she says Yes, then u will be ok. If you tell insurance, I take it you have informed them of ms, the insurance will go sky high

hi sorry to hear you have on in both eyes…I am still getting over itin left eye…started mid jan and inflamation didn’t go down till April…but have not been able to drive either…being short sighted before my eye got allot worse so legally not able to drive…will known fri at optitions if am within the visual limits for driving. you need at least one eye to meet visual criteria re driving. I was discharged from eye neuros end April but they’d said to give it 2 months till going back to optitions for a new eye sight test/ pinhole test. steroids can help but it will improve on its own and for most it will go back to what it was before…I still have colour fading but it’s improved…can live with that…have oscillopsia too in oth eyes…all should settle once new contacts glasses…but it’s a it like how long isa piece of string…!! hang in there and stay positive…

Thank you…

Anon - I am not dx as yet so I havent spoke to insurers at all.

Scoobie68 - thank you :slight_smile:

Just found out that optholmologist app on Thursday is cancelled as the docs are on strike… so gotta wait till the 6th July now :frowning: sometimes everything feels like its working against me! x

I just wanted to clarify something:

If you have been diagnosed with MS, then by law you have to tell the DVLA and your car insurance company, it will not affect your insurance premiums.

I am sorry I can’t answer the original posters question. Although if it is of any help I have had ON (one eye only) and my sight recovered completely without steroids. It took about 18 months to recover completely.

Good Luck!

Thanks AnnieB. I knew you had to tell insurers and DVLA if you were actually dx but Im not dx yet. Also, I didnt have steroids for 9 weeks, then was put on them for 3 weeks and they seemed to help alot; I even got out in my car then, but I stopped the steroids and now my eyesight is terrible again. 18 months is a long time for complete recovery… could you drive before that or did you have to wait the full 18 months? I may as well sell my car if thats the case as its just sitting outside now :frowning: x

I don’t know what you need to tell your insurers and when. It might be a good starting point to check the small print of your insurance to see what it says about any changes in your ability to drive that do not actually have to be reported to DVLA (for instance, your ON.)

Regardless of anything that says, your dr has told you that you can’t drive, so obviously that remains the case until you get better. It is a total pest not being able to drive - I was off the road a couple of years ago for a while and it was as vexing as it was expensive. Personally, I did not drive again until I had the all clear from the opthalmologist to say that everything was back to normal, but I have no idea what the formal position is. (My eyesight problems were MS, but not ON.)

I really hope this all becomes an irrelevance very soon when your sight recovers. I am sorry that you are having such a horrible time.

Alison

x

Thanks Alison. Always helpful to know what other people do in this position. I am actually thinking of selling my car anyway as no point in it being outside. I have only driven about 4 times in 14 weeks now anyway. My eyesight seemed to get a little better, but now its back to being rubbish :frowning: hey ho though… it will go eventually Im sure x

Hi again

I would be guided by your doctors as to your ability to drive. Alison has given you some very sensible advice.

Your ON sounds horrid, mine was only in one eye. I was completely blind in it though. It took about 6 to 8 weeks to start to recover. When I said 18 months, it was to recover completely, my eye is now to all intent and purpose ‘normal’.

I didn’t mean to imply that you were diagnosed and hadn’t done the required notifications, I was concerned by the earlier post that said insurance premiums would go sky high. You are either fit to drive or you aren’t, if you are deemed medically fit to drive then the premiums should not be affected.

MS is a b u g g e r, it’s not for cissies. One of the hardest things I have found is learning to live with the unpredictability, anything is possible

Good Luck!

The above post from Anon in this format is from me. Why it was posted anon I don’t know I didn’t click the box honest!

Grrrrrrrrrrrrrr technology!

Thanks AnnieB. I didnt think for one minute you were implying anything :smiley: It is horrible as I have always had good eyesight, and I woke up one morning with a third of my eyesight in my right eye missing. Then, about 6 weeks later the other eye went blurry. Its horrible having this double vision and blurriness as it affects everything I do. And of course I am bored senseless with being stuck in the house with no energy to do anything! As well as the ON I have lots of other neuro stuff going on - tremors, jerking arm, back spasms, etc etc. So its a pretty rubbish time at the moment! Anyway, thank you I appreciate your advice xx

Thanks Claire, I am really pleased your eyesight has gone back to normal xx

hey…can appreciate your frustration re driving…my On happened at a time when my mutability car was due to go back…I found another. model but could not test drive it, so have to wait now. So keeping my mobility allowance until I get the ok to drive again…it’s expensive re taxis etc…and my independence feels less…sorry to hear you are having other neuro probs too…I am not dx either and have had neuro stuff going on for some time but about 3 wks into on started having left arm probs too and still having those…so it’s ot great dealing with the ON too…steroids do help as you say but they do not exclude it from coming back in the future…I was very tired too during my On and brain fog was bad but eye drs said it was my brain trying to cope with the lack of vision in good eye which has gone lazy too…so am relying on my other eye where vision is not great due to high prescription which although has not had ON the vision has gone bad in that eye too since ON in left eye… I would hang fire on selling the car…you may be kicking yourself later…and it will improve just takes time…it’s diff for everyone…and we are all unique in that respect… so hang in there…I know it’s pants…x

thanks scoobie68. sorry you having a tough time too… it really is pants xx