I went to eye clinic yesterday and was told my loss of vision was caused by ON I also had scarring in my other eye from previous attacks. I will be called back every few weeks but they are not prescribing steroids.
I first remember having loss of vision 22 years ago but was only diagnosed with me in 2016.
hi christine have you got a consultant for your ME? or a specialist nurse? they can prescribe steroids if that’s what you want. i have MS and had high dose intra-veinous steroids just the once. since then i have refused them because i asked for a bone density scan. it turns out i have osteo paeania (spelling?) which is a stage below osteo porosis and i don’t want to risk it. steroids for MS just speeds up the recovery time, it’s not a cure (alas). so i’m just asking if you really want steroids. keep up the appointments with the eye clinic, you may need prisms. be well carole x
Thanks Carole My GP has just made a referral for me to see neurologist. Iv not got one as I moved areas recently. I too have the same osteo condition you mentioned. I don’t think the ON was very severe if that makes a difference for steroids. Christine
Hi i had mine 2000 which was ignored. I know i have had ON because i have had 2 positive VEP tests bilaterally and never had steroids. like carole i too have osteopenia in my tail end. I dont want it to get worse.
My eyesight is actually good and improved, as its not my eyesight that is an issue. Its the demylinating along this particular pathway which shows my brain to my optic nerve has slowed right down due to damage to nerves the the optic nerve. i read up a bit about it, and it said you cant always see the damage. years ago when i had my eye checked they said the disc was pale whatever that means. recently i had a check to see if my optic nerve was ok and so far it is. i havent touch wood had another attack for about 4 years. Mine can start with pain or weird flashing lights. My neurologist did do the VEP tests which like i said were positive. also he uses colour cards with numbers which is an indicator of poor colour vision. I usually failed a few of them lol. (Like when they test for colour blindness).
steroids are only good if you start them very quickly when you have an attack. if not its pointless.
It does usually resolve itself. a lot of people have ON and never realise.
I had optic neuritis in 1989. When I asked if there was any treatment I was told that some doctors prescribed steroids, but there was a question over whether they actually helped. Nothing was done. I have no central field of vision in my left eye. An optician has told me that my disc is pale, which apparently has something to do with the blood supply, iirc. Regarding eye pain and flashing lights, the first makes me think of uveitis, the second makes me think of posterior vitreous detachment. I’ve had both. An optician could tell you that you’ve had uveitis, but you’d need to see a specialist to get PVD diagnosed, or to get treatment for uveitis. I’m not saying that you have either of those, I’m not a doctor. But if your eyes give you any kind of trouble, it’s worth seeing a specialist.
I had a bad optic neuritis attack last year. It affected both my eyes at the same time but the right was considerably worse (blind). A year later I’m still blind in my right eye and have blind spots in my left eye. Consultant said its permanent and I have regular checks on my remaining vision…I’m still driving thankfully