5 years ago
Optic Neuritis Blues

Hey everyone! Hope you’re all enjoying your fridays 🙂
I’ve had a flare up of ON in my right eye – kinda like a fog curtain has been lowered over it! pretty much zero vision atm leaving me very off balance and i have no depth perception whatsoever! This is first time I’ve had a symptom that has actually physically affected me so profoundly (dx Oct ’11) before this it’s all been sensory stuff.

I was wondering if any of you have experienced similar symptoms and what you did to cope with it? at the moment i’m doing my usual thing of just getting on with it – sat at work periodically knocking cups of tea over 😉

My MS team are aware and asked me to cal back monday if it hasnt got any better – just gotta get through the weekend without tripping over the cats! 🙂

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it was a whole ago, but I wore an eye patch as it seemed that the distortion was making me more off balance than not, it also rested the eye a little (I was studying for my finals at the time so I couldn’t switch off!)

I hope it passes quickly for you.

fingers crossed – last time I had problems with my eye it was only pain with no visual disturbance and lasted for exactly 2 weeks.

I will definitely try the eye patch idea 🙂

Thank you!

I had a similar thing in my right eye last October, I was put on steroids (500mg of Medrone for 5 days if memory serves) which helped speed up recovery, so that may be what you get offered on Monday if it’s persisting. I’d also lost almost all feeling in my hands at the time as well so was a complete menace, to cope I got my lovely (and immensly understanding and supportive) girlfriend to help me out a lot, especially with things like making tea as pouring with no depth perception was tricky and a loss of proper control in my hands meant I was liable to randomly just let go of things! Joy! And at work I was anchored to my desk really for everyones safety!

I hope yours clears up soon and fully….and I wish I’d thought of the eyepatch thing, and not just because even at my age I think looking a “little bit pirate” would be immensely cool…..

My left eye stopped moving and created double vision and balance issues it was very scary (i then got diagnosed) but after 6-8 weeks it eventually went. I find with relapses that the initial symptom happens and goes mad then after a few days it levels out and settles into something and then slowly goes day by day. An eye patch helps or selotape over glasses if you wear them. 🙂 good luck


Anonymous

Don’t know if what I’ve been experiencing is ON or not but I’ve had a similar experience.
Ache behind my right eye with mild haziness in my vision. Sometimes it gets worse and I have blurred vision and sometimes it just seems like a film is over my eyes. And three or four times its gotten bad enough to cause a severe bubble effect where its like I’m looking through thick glass – everything is distorted and my pupil becomes VERY dilated.
I just try to move carefully when this happens and try to take it easy while its happening.

Good luck! hopefully it clears up soon. Would definitely call your team if it doesn’t go away by them and see if there is anything they can do to help.

I always had 20/10 vision until my last exacerbation, now I have blurred vision that drives me crazy. It’s usually there but not always, and like Chels, I have one pupil that is larger than the other one sometimes. I called my neuro and he said he was confident it was probably not ms related and told me to go see an eye doctor. I really need a new neurologist! Once again he was wrong, big shock there, when I went to the eye doc he shined light in my eyes and in about thirty seconds told me I had optic neuritis and asked me if I had ms. He knew right away it was optic neuritis by the way my pupils responded differently to light. He did further testing and dialated my pupils to look at the optic nerve and confirmed what I already knew. There was inflamation behind my eye causing my optic neuritis. It’s very frustrating but not as bad as some people get it. It’s been a few weeks now with minor improvement, but overall more annoying than debilitating. I hope your vision improves before long. It’s a scary thing to have vision problems especially when you normally have good sight.

it might be optical neuritis or diplopia, usually those two things are treated with a pulse of steriods endovenose, for three to five days depending on the doctor opinion, so maybe u should ask ur neuro about going to the hospital. Its annoying but it will go away very fast with steroids 🙂

Regarding steroids as mentioned by Ricardo, my neuro and nurses have always told me that the steroids are basically a “fast forward” for symptoms. It may not cure it and it may take a bit of time. My ON from October hasn’t fully cleared up inspite of 5 days of steriods I mention in my post above. My left eye is however compensating for any slight differences very well so I don’t really notice it from a clarity point of view. My colour vision, on the other hand, is most likely permanently affected. Not that I’m trying to put a downer on things, just making sure people have a realistic view of potential outcomes.

I do really hope yours clears up entirely, mine did the first time around.

I dont know how doctors treat ms in your country or europe @CaptainKristoff, but here in america, doctors use steroids each time a person has a relapse so they can make worst symtoms go away faster than they would without steroids. theres no magic trick here, but storoids are the only thing that will help when someone has a relapse, so theres nothing to make clear, theres no cure for anything, is just about the person, on how they react to them. Each time ive been in a clinic and have steroids i went aways having no syntoms at all. the steroids are just a way to help.

I had a dose of steroids recently via an IV infusion for 5 days. 1000mg of solumedrol once a day for five days. The steroids reduce inflamation and calm your immune system down. While the steroids do help in my opinion, they do nothing to repair the damage that has been done. Only time will tell how much you will recover from an exacerbation. But I believe the steroids during a flare up really help. I do get the nasty side effect of not being able to sleep when I’m on them though. It’s the only treatment for a relapse as far as I know.

i totally agree with u @chueykooh the insomnia used to bothered me more beofre, but now that i have to take pills to go to sleep its fine lol. Yeah i really helps, wont do anything with damage, and as u said time will tell. but its a good way to calm the dragon down!

i’ve had a headache for ages and felt like i couldn’t focus properly. it was really sunny this morning and i could feel the familiar nag behind my right eye. it’s only been the perpetual greyness of the british summer that has saved me from more pain. i’ve also realised my colour perception is different in both eyes. it’s only been 8 weeks since my last relapse, is this just a continuation or just a flare up of old damage because i’m recovering from a big attack? i can’t bring myself to get in touch with the ms nurse over this. i haven’t lost any sight

after my optic neuritis (whee i completely lost the sight in my right eye) i didn’t have colour vision for a couple or more weeks but it came 95% back to normal finally just a little faded. the doctor says this is to be expected though. so theres a good chance you will recover to a good level of sight in your eye. i hope you eye recovers fast. take care 😉

I have blurred vision in my right eye daily. It is sometimes better than others. Stress and heat will make it worse.
The IV steroids solumedrol never really helped me and neither does the oral prednesone. I told my neuro long ago she could keep her steroids. I will wait out the problem. I have to say I feel better for it.
On another note, I cannot take DMA either. I have been off them for 4 yrs. B/c of terrible side effects. I have tried rebif, avonex & copaxone. Copaxone wasnt bad but I did have a severe reaction the last shot and will not do it again. SCARED! The other just made my life and the life of those around me miserable.
Now with new treatments coming out my neuro is going over my MRI’s and we will discuss options again in Aug. I am scared I am doing a disservice to my body but I COULD NOT live on those shots. My body never recovered from the side effects. I think it depends on the person as to how their body is going to handle all that medicine.

Hi everyone – thanks for all your replies! Sorry that so many of you have had issues with your sight 🙁 Thanks for all your well wishes!! This was my first post and it was lovely to see how readily people responded by my very boring question 😉

@funnybank – once a flareup of ON has passed your vision may still be permanently affected which can include colour perception. I’m not quite sure how this episode is going to leave my eyesight in my right eye. My neuro today told me that if your vision is affected but with no accompanying pain then in al likelihood it is just the symptoms being exacerbated by external factors (heat etc). as my vision probs have been accompanied by quite bad pain it is new inflammation, independent of any external factors.

After looking in my right eye for about 5 secs the neuro said he wished his med students were there so they could see a textbook case of ON…haha 😉

@CaptainKristoff – yeah they’ve given me 5 days on 500mg of medrone too. first time on steroids so i’m a bit nervous :-/

hope everyone is well!! it’s quite sunny here in swansea today (for a change)

Worked great the first time. I am now 60 and it does not work any more. Don’t want to be a buzz kill but you can do much better with all the treatments I did not get. Good luck and feel well!

I lost all but my periphery vision in my right eye for about two months. I wasn’t yet diagnosed and the hospital sort of messed about a bit so I didn’t get any steroids. The first week or two was difficult – nearly falling off of the curb a lot, difficulty crossing the road,etc – but once you realise what your weaknesses are you just end up being more careful or finding ways around it. My vision returned to almost normal within two months, untreated, and the residual effects are still here ten years later but I still have better eyesight than most.

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