Hi everyone. I’m really after a bit of advice and unsure what to do. I’ve been diagnosed with Optic Neuritis 2 weeks ago by the Opthalmologist. He has referred me for MRI and to see a Neuro. I have had complete blindness in my right eye for 2 weeks now with no improvement. I’ve had my appt come through for my MRI and follow up to the Opthalmologist for 3 weeks time. Am I best just waiting now. My worry is my vision isn’t getting any better at all. I’ve not yet been allocated a Neuro until I’m guessing after my scan. Any advice would be greatly appreciated. Thanks Emma xx
Hi. Has no one recommend you go on high dose short course of steroids? If I was you I’d try and get a gp appointment. They don’t cure the optic neuritis but will shorten the duration. I’ve had it 5 times over the years now, usually lasts up to 2 months for me. Don’t worry though your vision will come back
Many thanks for your reply. No the hospital are unwilling to offer the steroids. They said doesn’t change anything longterm. Did you have complete vision loss for 2 months if you don’t mind me asking? This is the first symptom I have so very early days, I’m hoping my MRI will give some answers Emma
Oh that’s a shame, I used to find they helped. Yes on a couple of occasions I had no vision in my left eye at all and in my right was like a black blob I couldn’t see around. This lasted up to 2 months. My most recent episode of optic neuritis lasted 6 weeks but that was just blurred vision & light sensitivity which I think the hot weather made worse. Hopefully won’t be too longer wait for your mri.
Sounds like I just have to wait then. I haven’t been told very much which doesn’t help and spend a lot of time on Google. I’m just panicking as there has been no improvement. Thank you for your help. Appreciate it. Emma
If it’s the first occasion then they are not likely to give steroids. My partner started with double-vision and went through the NHS mill. After 2-3 months, vision came back to normal but the MRI showed the classic lesions.
Second occurrence was loss of vision in the same eye a year later (this year). Now it has been formally diagnosed as MS, they’ve thrown some steroids at it.
Hi Nathan. Many thanks for sharing that with me. Hope your partner is keeping well. Yes I’ve begun to realise this is going to be a very long process now. After hearing other peoples experiences I’m hopeful to get some vision back. I just feel like I’m stuck with this and been told sit and wait. Thanks Emma
I too had ON but this was 20 years ago. It got better in a few weeks without medication and hasn’t recurred
Julia x
Thanks Julia. I’m keeping positive now. Everyday I wait for an improvement. I’m sure I will get there too. Emma x
You will get there Emma and then forget how bad is was!!
Julia x
Where I live, the view on steroids for ON is the same (or it was the last time I had cause to enquire!)
I hope that your vision heals very soon - things going wrong with vision are very frightening, as I know all too well.
Alison
Thanks Alison. Yes I live in the North West, I’m under Bolton hospital now. I feel worse I think as I’m due back at work from maternity leave next month too and I currently can’t drive at the minute. Emma x
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