Papilledma/optic disc swelling experiences?!

Hello, so I went to see my GP on Monday because I’ve been getting some pretty awful headaches which I thought she would put down to stress and also been feeling sick which I thought she would put down to my vertigo, but I went anyway and she had a look behind my eye and said that the disc at the back of my right eye looks swollen and I’ve been referred to have it looked at by eye specialists. Has anyone else experienced this and is it normal with MS. I did suffer with double vision a while back but that doesn’t seem to be a cause of optic disc swelling as far as I can tell and I can’t find much that relates it to MS although my GP said it probably is connected. Any information or experiences on this will be greatly appreciated! Thank you, Beth

Hi Beth

Optic disc swelling can be caused by MS (optic neuritis) but also by many other things such as raised intacranial pressure which can be more related to headaches. It sounds like you need an urgent referral to the ophthalmologist one way or the other.

I’m not sure if you’re diagnosed with MS or in limboland but I’d take it easy in the meantime and try and rest up. Have you noticed any change in your vison or colour? If it gets worse then you should cart yourself off to the nearest eye casualty - visions very important.

I’ve never had optic neuritis that I know of so can’t tell you how it feels but I’m sure someone on hear will be able to explain.

Hope you get seen soon.



Hi Reemz, Thank you for your reply, I was officially diagnosed with MS last month so I’m still pretty new although I’ve had symptoms since February. I actually have an appointment with my opthalmologist tomorrow as a follow up appointment for my double vision episodes so I will hopefully get some more answers then. My GP referred me to a different eye place for Monday even when knowing I have this appointment tomorrow… I am still trying to understand that decision: something about getting the results back from the other place sooner. I was just confused about the relation between this thing and MS. As I mentioned I had double vision for a while is this also considered as optic neuritis? Thanks again, Beth

Hi Beth, in the late nineties I was sent to hospital as an emergency and the Opthamologist diagnosed papilloedema. They queried a brain tumour and I had a CT scan a few days later.

It turned out to be optic neuritis as leg problems developed too and I was admitted into hospital. I have had double vision with optic neuritis when looking sideways. They changed the term to papillitis due to retrobulbar optic neuritis. Different Doctor’s use different terms and it can make things very confusing.

Good luck with your appointment.

Jacqui xx

Hi Beth

Double vision can also be caused by many things (a break down of an underlying squint/trauma/different vision in each eye etc) - in MS the most common cause is a usually nerve palsy which is seperate to optic neuritis. It’s where the nerve doesn’t give the eye muscle the correct information and as a result one or both eyes don’t move together resulting in double. The severity and direction of double depends on which muscle or nerve is affected ( there’s three nerves that supply 6 eye muscles for each eye). The optic nerve is a seperate nerve by the way this nerve passes information about vision/colour/ peripheral vision from the eye to the brain and vica versa. Hope that makes a bit more sense.

I’m not sure about your GP’s decision but it does seem sensible to mention the optic nerve swelling to your current ophthalmologist as you’re going there any how. You can always still do as your GP has suggested also.

Good luck. Let us know what happens.



Thanks again for the feedback guys. I went to see my orthoptist and everything is fine, was worrying for nothing! Just thought I’d let you know :slight_smile: Beth