Hi I have recently been diagnosed with ms can anyone give me there experiences with optic neuritis as this is worrying me the most at the moment
Hi Emma, what is it you are concerned about? Leah 
If I will totally lose my vision in both eyes and if so how Lon does it take to come back
Hi Emma
I have Optic Neuritis in my right eye and have had for almost a year now (it was one of the first things that decided my diagnoses). I haven’t lost my vision though, it just goes a bit blurry when I’m hot or tired (good excuse to avoid the gym!) and, if I’m completely honest, it can hurt a bit sometimes - but not really painful justmore of just an annoying ache, and only when I’m shattered.
Do you have Optic Neuritis at the moment? If so, you can always speak to your nurse about it because they’re there for exactly these kinds of concerns, and they may refer you to an Neuro-opthalmologist to keep an eye on it. Mine are at Kings College in London and they’re a really nice bunch.
If you don’t have it, then really don’t worry about it. Everyone’s experience with MS is different, so you may never get Optic Neuritis, or any of the other joys of life that can come with this thing.
Hope this helps.
Lucy. x
Thank you so much for the advice I think I have just read up on the internet and it has panicked me I will go blind in both eyes. I haven’t been given an ms nurse yet as just been diagnosed about a month ago so don’t have anyone to talk to thank you again x
Emma, like Lucy says, Optic neuritis isn’t always blindness. I had/have optic neuritis and I didnt believe it for ages because there was not much wrong with my vision. All that happened to me also was a bit blurrier, very faint reduction in colour intensity, and that eye seems to be less well “lit”. When you read about it it talks about losing vision or holes in vision.
My understanding is that it doesnt happen to everyone with MS and when it does, it tends to be in one eye rather than both.
I am not dxed yet, but one thing I am beginning to learn is that it is best not to worry about what might happen, just concentrate on enjoying today.
Leah
Hi Emma
Just as a quick reply about the MS nurses (before my boss tells me off for not working!). You can refer yourself to a nurse; I did because it’s a hell of a lot faster than waiting for the NHS to get on it!
If you google MS Nurses in your area, you’ll be able to call them and tell them you have MS. My nurse, Stephanie, was pretty much my lifeline when I was first diagnosed. She sorted out my Betaferon, got me physiotherapy and hydrotherapy, supplied my medication letter for my flights around Hawaii and even got on the case when the delivery company refused to leave my meds in my garden (I work in London and live in Brighton so could never be there). You’ll see the nurse a lot more often than the doctors, so I strongly recommend you refer yourself asap.
Lucy. x
Thank you so much for all your comments it’s nice to talk to someone who are going through the same thing…
Also what will happen now I have been referred to the kin Edward hospital in Windsor will I be given medication??
I’m glad we’re being of some use to you. It’'s never easy trying to explain things to someone who isn’t going through it, and I use this forum a lot to vent!
Medication depends entirely on you and your consultant. I’m on disease modifying medication called Beta Interferon (mine’s Betaferon, though there are four to choose from), but it was a decision my neuro and I made together and I have a Betaplus nurse who was assigned to me when I started using it. Before I made any decisions I was given a lot of pamphlets to read on medication, diet, working with MS etc etc, and although it’s a lot to take in, I do recommend you read them because they are much more useful (and a lot less dramatic!) than Doctor Google!
Do you know what kind of MS you have? I have relapse/remitting and my mum has secondary progressive. If you know what you have, you may find it easier to concentrate only on understanding that one until the time comes when you need to read up on one of the others - and that time may never come.
There is so much can be done for people with MS these days, that really I think we’re quite lucky. Back when my mum was first diagnosed, there was only one type of Beta Interferon and if your body didn’t like it (which mum’s didn’t), you had no other medication. She was offered steroids, but that was all she could do and had she had the options we have now, she may well have stayed away from secondary progressive longer.
My neuro told me that there’s another drug they’re hoping to pass in a month or so that some Relapse/Remitting MS patients will be able to take orally (Betaferon is an injection - but not as bad as I thought it would be) and they’re always researching so you never know. Mum reckons they may well even have a cure in my lifetime (I’m 36).
As far as I’m aware, there’s no meds for Optic Neuritis - only steriods. But living with it really isn’t that difficult and if at any point you do feel that steriods would help, it’s a discussion you can have with your nurse.
Please don’t worry too much. Everything you’re going through someone on here will be able to relate. The big thing for me is to try and live my life as normally as possible. I didn’t get MS the day I was diagnosed, that was just the day they confirmed it. I had it before then and was doing stuff like working etc, so I don’t see why things need to change at the moment.
Sorry, I’ve never been good at saying things in short. I always end up typing an essay!
Thank you for your reply I’m just in a bad place at the moment panicking about what’s going to happen I have got optic neuritis I’m just panicking g that I’m going to get it and what I have read on the internet it is not nice at all… That’s what I keep tellingyaf just need to love everyday as it comes but very hard at the moment xx thank you for your advise
That was meant to say I haven’t got optic neuritis
Hi Thought I would let you know that I contacted the ms nurses in my area but they said I need a referral from my doctor or the neuro so that is all being sorted so thank you again for the advice xx
Hi Lucy, How do u know which ms you have???
Hi Emma, my understanding is that you are usually told at diagnosis. But in short relapsing remitting you tend to get periods when symptoms occur and then they get better for a while. Progressive means that you have a slow continual detioration… Leah
Thank you Leah x
Can anyone else share there experiences with optic neuritis
Hi Emma,
I’ve had Optic Neuritis twice, about two years apart, and both episodes quite mild. The main symptom for me was intermittent double vision - seeing things twice, one above the other. It was a bit annoying, but nothing more. On both occasions it lasted for about three weeks. This was many years ago and it has never returned.
Hope that helps.
Ben
Thank you Ben did it effect both eyes??
Yes, Emma, I think it did, but it’s just a memory now, no lasting damage.
Don’t worry yourself, it may never happen!
Ben