Forum

Optic neuritis

Morning guys,

I am new to this so please bare with me!

Ok so last year I had optic neuritis symptoms (although I was not told this is what it was) It was dismissed as nothing and then this year (june) i had the same symptoms back again! I contacted the doc who then sent me on to the eye hospital who then sent me to yhave an mri and lumbar puncture, I was in hospital for 5 days while they tried to figure out what was wrong I had IV Steroid treatment which helped me slowly regain my vision… the hospital then told me I would have an appointment with a neurologist and they told me I had optic neuritis… I left hospital without a clue of knowing what it was… so did the dreaded thing and googled it and every hit returned MS… I thought surely not the docs would have mentioned that wouldnt they!

I had my neurology appointment 2months later and low and behold… I have MS! the neurologist was annoyed that I was not sent for an MRI last year… So i wasnt too shocked to be honest as good old google had already confirmed it in my mind!

So guys little over two months after it went its back!! but its affecting my left eye instead of my right… do I need to go back to the doctors or is this something that will just pass on its own?

Also are there anything that can trigger a relapse?

Im still waiting to see an MS Neurologist for medication and to talk through everything so still abit up in the air about things…

other than the optic neuritis and slight tingly feeling in my shoulder I havent had anything else!

so if u guys have any hints or tips on what to avoid (if there is anything) please do share!

Thanks in advance xx

Hi there, I had optic neuritis last Xmas, came on on Xmas day which was just what I didn’t want for Xmas I can assure you!!! Anyway mine was quite severe and I went totally blind in my left eye. Slowly but surely my vision came back but I still have a litte blurring in my eye, obviously some permanent nerve damage there, bummer! As far as your questions with regards to what to avoid, I think the biggest contributor to all my relapses has been stress. I was very ill with anxiety and depression and all my relapses so far have been when my anxiety/depression has been at its worst. There are certain diets you can follow which claim to stop symptoms but they are quite hard to stick to. I am trying my best to avoid meat and cut back on dairy products but not finding it particularly easy. But I still think stress is the number one culprit. Hope that helps a bit and just fire any more questions my way if you want. Best of luck, Lisa xx

Certain things trigger symptoms, but not necessarily relapses as there’s no new inflammation. At least that’s how I understand it.

Heat/humidity, overdoing it, lack of sleep… all play a big part in my symptoms flaring up x

PS, I never had steroids for my optic neuritis as I was told it would go away on its own, with or without steroids. But if you have an MS nurse you may want to let them know of your current problems just so it’s noted on your file. Xx

Hiya

Like MrsChicca said overdoing it, getting too hot or the weather being humid is a killer for my Optic Neuritis. I put an ice pack at the back of my neck and that help. Try and keep away from stress too. I know this is hard though.

Hope you manage to fnd a way of controlling your symptoms.

Shazzie xx

hi, Ive just had optic neuritis in my right eye which has just taken nearly a month to clear but has all so left me with lose of vison but if this is your only symton it might clear sooner and it might come back completely, try not to focus on what you don’t have but on what you do have. good luck sweet heart. if you need any thing must people on here are happy to help. love kathy

Hi OP,

I have had optic neuritis 3 times in the last 12 months.

The initial time it was really bad and resulted in my MRI and diagnosis. I had steroids which cleared it up (that was last October). It came back in Feb but I was due another bout of IV steroids that week for another symptom so it went away within a day or two of having the steroids.

It came back again a couple of months later and I’ve had it since although it’s improving. The third time it came back I called the MS nurse and she said that as I’d had IV steroids in September, December and February, they wouldn’t really be able to give me more.

I was back to the neuro in July and he arranged one day of steroids which helped but didn’t clear it up completely.

He also booked another MRI and the plan is to change my DMD soon as he feels the activity of my MS is too much seeing as I’m on DMDs. He thinks they are reducing the severity of my symptoms but not the frequency and wants me on something stronger (I’m on copaxone so we’re looking at Gilenya or one of the new drugs due out at the end of this year).

The IV steroids will speed up the remission of optic neuritis but it won’t improve it. Studies have shown that the same level of sight returns with and without IV steroids but it’s faster with them.

Hi OP,

I have had optic neuritis 3 times in the last 12 months.

The initial time it was really bad and resulted in my MRI and diagnosis. I had steroids which cleared it up (that was last October). It came back in Feb but I was due another bout of IV steroids that week for another symptom so it went away within a day or two of having the steroids.

It came back again a couple of months later and I’ve had it since although it’s improving. The third time it came back I called the MS nurse and she said that as I’d had IV steroids in September, December and February, they wouldn’t really be able to give me more.

I was back to the neuro in July and he arranged one day of steroids which helped but didn’t clear it up completely.

He also booked another MRI and the plan is to change my DMD soon as he feels the activity of my MS is too much seeing as I’m on DMDs. He thinks they are reducing the severity of my symptoms but not the frequency and wants me on something stronger (I’m on copaxone so we’re looking at Gilenya or one of the new drugs due out at the end of this year).

The IV steroids will speed up the remission of optic neuritis but it won’t improve it. Studies have shown that the same level of sight returns with and without IV steroids but it’s faster with them.

I’m into my 13th or maybe 14th week of ON and still in pain. Vision still poor. Worse when I over do it and if I am over tired (most of the time!!) The bright doctors light flared it up badly 2 weeks ago too!! Think it’s finally settling but as I got out if bed this morning for work I felt the familiar pain which has stayed there all day. Seemingly on examination the nerve is still inflammed. It just takes time from what I’m told. I’m def on the mend now so hope you have the same luck!! Lilly xxx

Hi I started off with ON too. It came and went over the years and I thought it was brought on by a neck injury!! The internet was available then! Eventually my GP sent me for tests and behold it was MS. I had a bad bout of ON which just stayed for months and was told I would have it permanently. I cried! wimp that I am. But again it disappeared. Ehat I’m trying to say is MS is a tricky one! It pops up and disappears and you never quite know what the triggers are. I know that I feel better when I pace myself, eat well, keep off the sugar and am stress free. I can only try to do the right thing. Trouble is stress can just happen if there is a family problem so I just manage what I can and keep my fingers crossed. Good luck to you

I think I’ve had ON. I put it down to my neck being sore though as it felt to start from my neck and go through to my eyes. Got blurry round the eyes vision now. Opticians next Tuesday z