ON eye pain and recovery

Hi Everyone :raising_hand_woman:

Hoping to get some advice on ON recovery times and experiences as I am experiencing lingering eye pain which is worse than at the start.

I recently came down with optic neuritis in my right eye around 22nd March and had a MRI which confirmed ON and showed lesions on the brain which they suspect to be MS (I have a neuro appointment booked for July so limbo for now) I was placed on a course of steroids for the ON: 1200mg of Methylprednisolone for 3 days then onto prednisolone at 60mg and tapering off. In fact my ON recovered astonishingly in the first 3 days of steroids and vision now is still nice and clear. However 4 weeks now since coming off the steroids (the doctor gave me a quickened tapering off course when she heard of quick recovery) but I have now in this time been experiencing eye pain in BOTH eyes, made worse by eye movement, light and screen time, especially my phone. Is this normal? Is it possible that the ON has potentially come back but in a way that hasn’t affected vision?

Would be great to learn from anybody else’s experiences with ON and recovery times, and you have dealt with any eye pain (especially at work)

I never knew i had ON. i had awful eye pain on and off for months then it just went. it wasnt until i had a VEP test which proved i had it i realised it was what it was. my MS nurse told me when i get an attack again i should be put on steroids, once you have had it so long they dont work. so it does work as you found out. i would talk to your doctor and tell them the pain is still an issue.

I am really sorry that you are having such a worrying time. Vision problems are horrid and frightening, and I’ve had a fair few of them over my years with MS, so I really feel for you. I am glad that you had a good response to the steroids, but sorry that you are getting some eye pain now. I am absolutely no expert, but in my own experience, eye pain without obvious visual disturbance certainly is something that ON can do. What I might consider in your shoes would be talking to your GP again and trying to get that specialist neurology appointment brought forward if possible. If it does turn out to be MS, particularly if it’s being pretty active, the sooner you get a diagnosis and get on some disease modifying drugs (DMDs), the better. The steroids deal pretty well with symptoms, but they do not address the underlying disease process: you need DMDs for that, as I’m sure you have already learned for yourself. Fingers crossed, that eye pain resolves quickly, and that you get some answers soon on what is amiss.

Hi, 2 bouts of ON ultimately lead to my RRMS diagnosis, my vision returned well, but not as good as it once was. For me ON felt like something pressing on my eyeball, just that constant pressure. It eventually cleared up and hasn’t been around in 3 years or so. I’m now on Tecfidera which has been good for me.
Hope all works out for you.

Thanks for all your advice - as a result I tried to speak to my Moorfields doctor who said I was no longer in their care and to speak to the neuro hospital they referred me to… who then came back to me and said to go back to Moorfields! It feels like no one can be bothered to see me. Going to try again with Moorfields :pensive:

Oh dear! I am sorry that you are struggling to get the expert medical advice you need. Good luck with that.

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