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Optic neuritis help...

Can anyone help. I’ve been losing sight in my left eye and it is looking life optic neuritis. It is getting progressively worse…

I can’t get my Ms nurse as there are now only 1 and I’ve left a message last week but nothing prob till Wednesday. My neuro left and rhe secretary is away till Tuesday so left another message there to find my new neuro and get an opinion

im guessing that this means a relapse… But what can I expect? Should I still drive. The sight in my right eye is perfect - has eyes checked and rechecked at Optician.

I’m a bit scared. This is my first big relapse since 2008 all the rest since that big one have been little and more annoying than disabling. I am not sure whether to keep on like normal or what to do.

sorry for sounding so pathetic but in the absence of any medical help I am just unsure what to do and what I’m dealing with.

thanks x

Anything to do with eyes is very alarming but when I had it there was no treatment so it was just a matter of waiting it out till the optic nerve recovers. That was years before MS so when my vision went weird, I went to the A & E department of Moorfields and they diagnosed it.

i would say definitely don’t drive if there is anything wrong with your sight, I couldn’t drive till the sight was back in the affected eye. It will also invalidate your insurance so it’s serious.

It’s important to rest when it’s eyes as well so don’t push yourself. I was signed off work for six weeks and was driving again two weeks after that.

Hope you feel better soon.

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I had ON 10 yrs ago, sometimes I wore a patch to help correct my vision when I needed to but I didn’t drive until it was all cleared up. Im sure my neuro told me i couldnt too. Hope you get hold of your MS Nurse or consultant soon. XXX Sharon

I was told by neuro that if I have a problem like yours to call them immediately or out off ours go go to a & at the hospital where they are based g

Jem please google Biotin and Optic Neuritis MS and read the info. 91.3% of people on the trial improved with taking Biotin.

Steroids are supposed to help ON quite well (generally). If you contact your GP surgery and ask your doctor for a course of high dose steroids it may be what’s needed to kickstart your recovery. Obviously, steroids are a major drug and some people prefer not to take them. You should also be aware that each time an individual takes steroids the outcome can be different. One time it’ll shorten a relapse very quickly, next time it may not help at all. But with optic neuritis I would throw everything you can at the problem as fast as I could in the hope that it’ll work.

Sue

Oh, and I wouldn’t drive with ON either.

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Hi

I had ON in 2003 before I was diagnosed with MS. Fortunately(?) I was already under the ‘eye’ clinic’ at the hospital for another matter so was seen by the experts at the onset.

They didn’t advise anything, no steroids, no not driving it was a case of leave it to recover on its own and carry on as normal.

ON is frightening, you are not being pathetic. In my case (and we are all different) I went from being completely blind in my left eye to recovering to normal vision in it. I have not had another bout since.

As with all things MS, everyone is different. Most major hospitals have eye A+E departments. If you can, I would go there, if not make an appointment with your GP.

In hindsight, I should probably have rested with mine and at least taken time off work.

As to driving, if you don’t feel confident to drive then don’t. If you feel OK to drive then I would get professional advice as to whether you should.

Good Luck. Hopefully you will make a full recovery from this.

Anne

P.S. One thing that the eye clinic told me that kept me sane was that it would get worse before it got better. Mine deteriorated for about 6 weeks before it started to get better and took about 18 months to recover.

Hi Jem

I had ON about 7 years ago. It was very scary, but I only completely lost the sight in one eye for about 2 weeks. During that time I saw my GP who made me an emergency appointment with the eye dr at the hospital, but the time that came through my sight had improved a lot. At that time I was offered steroids but didn’t accept them.

My GP said it was OK to keep driving if I felt safe, which I did 'cos I had to and it was only ever short distances (much to my annoyance I missed the last “Oasis” concert before they split up because I didn’t feel safe enough driving to Cardiff).

When my sight went I had no 3D vision (i.e. couldn’t gauge distance, the speed of oncoming cars and parking was a nightmare). Please don’t even try when it’s getting dark! I found it easier when I put my hand over my blind eye - that might be a psychologic thing - your brain telling you "obviously you can’t see anything if you’ve got a patch on!).

When my sight did come back it wasn’t 100% for about a year and when my core temperature went up, my vision got blurred. And for a time when I turned my head, my sight was like a camera “panning too quickly” - very blurry. All better now though.

And I used to work with a guy who had a glass eye - he drove.

It’s horrible, but it does get better. Good luck!

Emma x

Wonderful thanks. Didn’t drive today and can walk to get my coach for work tomorrow. Need to go in to get my laptop. Then hopefully I can see someone and get all steroided up! Xx

I had ON in April. Complete blindness in my right eye. I couldn’t even tell light from dark at its worst. As for the majority of the time I had a small slither of vision to the far right, I used an eye patch. It really did make a huge difference. It’s as if the brain decided to ignore all information from the right eye, instead of constantly being very aware of the lack of vision!

I was seen in A&E, and referred to Ophthalmology. they told me that, as long as I felt okay, I could drive with no problems. People with only one eye drive, for example, and people who suffer from double vision drive wearing an eye patch. I didn’t drive for about 4 weeks, then did a few short trips to the corner shop until I was more confident. Be aware - you need to notify DVLA and your insurer. I did get prescribed a course of methylprednisoloine after 3 weeks, as there was no improvement.

I have been told by the Ophthalmology Consultant that if I have ANYTHING happen at all regarding my eyes, I have to ring the Ophthalmology secretaries and ask to be seen as an eye casualty. Might be worth giving your local hospital a call…

Hi Jemeraid

Yep i went total blind in the left eye in Jan 2013 and recovered very very little not enough for reading or watching Tv, i know wear an eye patch most of the time as the little light there is causes double vision, its now Sept 2015 so i think its as good as its gonna get, i notifyied DVLA and my Insurance right away now whilst i can still ride and drive i have to only do it with an eye patch on.

I get and even getting today pain in both eyes , when i light my fag it hurts to look down or at the flame and the left eye just achdes because it can, dont be too hard on yourself and take each day as it comes you will adapt and adjust but it takes time not to drop your coffee cup from 3000ft above the table thinking its down ( Didnt impress my wife much lol) as someone said above you dont get 3d the world is a flat place, it took me 5 months to learn to ride again trusting only 1 eye but also for the depth perception mentioned above.

The main thing is be happy but most importantly only drive or ride when y7our feeling 100% if not leave the car bike boat or airplane at home anyhoos hope it eeaases for you soon.

Respect sheep

Hi Jemerald,

I’m exactly where you are now. I’ve developed ON in the last 10 days in the right eye. It’s really painful & my vision is almost gone apart from a small circle in the middle. It’s very painful & light is bugging me badly. At least the burning has eased a bit now.

I rang my GP surgery & was referred straight to our local eye hospital where I was seen by a doctor, opthalmic specialist & then a neuro. Couldn’t have the intravenous steroids they wanted me to have because it would affect my heart so like you I’m really worried about loosing my vision in the eye. It’s also mildly in my left one too & that scares me as it’s only ever been in my right eye before. I only realised what my symptoms had been previously when I was seen this time so I’ve never had any help. I’ve just thought it was nothing much to worry about so I’ve never been seen by an opthalmic specialist when ON has been active. They’ve only seen the damage left behind from over the years.

I can’t drive any more because of my heart probs but I think you’re not supposed to while the ON is bad. It’d be safer for you if you didn’t.

Sending you my best wishes,

Susiex

Sorry to hear your troubles. I have def had visual disturbances in the past but I tend to ignore a lot of things and any issues largely improved on their own.

I had my eyes lasered in July for short sightedness so obviously was worried that I triggered this relapse then but I think it’s probably stress. I have an eye patch now. Don’t wear it all the time. The odd thing Is my sight gets worse as the day goes by. My right eye is now struggling for distance vision so I’m off back to the opthamologisr tomorrow so see if it’s the laser or whether I am getting on in the other eye.

will admit it’s good to be back on here with people with Ms and to get other experiences. Fingers crossed it comes back for both of us soon.

take care x