Can anyone give me advice on retrobulbar optic neuritis?

Hi, I’ve been suffering from retrobulbar optic neuritis in my left eye for 5 weeks now. At worst I could hardly see anything out of this eye. There is now a slight improvement. I went to eye casualty at my local hospital when I first realised there was a problem with my vision. I was initially given a very vague diagnosis of ‘you possibly have a swollen optic nerve and please make an appointment to come back in 6 weeks but come back sooner if it gets any worse’. I ended up going back several times as it got worse. In the end I was told if was optic neuritis and after doing my own research on the internet I saw there was a link with MS to this condition. I had an appointment today at the hospital with the optic nerve specialist. He said I should have been given steriods when I was first diagnosed with optic neuritis and also given a print out explaining to me about the condition (I was eventually given this print out today). He also said the problem is there is a lot of trainee doctors in the eye casualty!! Only once was it mentioned to me in my several visits to the eye casulty about getting steriods and I was told they have nasty side effects and do not make any difference to the final outcome. This afternoon I have been doing research into steriod treatment for this conditon and have found they reduce the optic nerve swelling, speed up recovery and can delay onset of MS is high risk patients. So now I know why I should have received the steriods. The specialist also informed me today that my optic nerve is now pale and that shows there is damage to my optic nerve so at best I will get 90-95% of my vision back. I can’t help but think if I had been given the steriods maybe this damage would not have occured as each time I visited the eye casualty I was told that my optic nerve was not pale which was a good sign, so perhaps if I’d been given the steroids the inflammation would have reduced before it became damaged??!! I’ve also had a brain MRI scan which has shown several white matter lesions and have been referred to a neurologist (I don’t know how long I will wait for the appointment). I’ve been so positive up to now that I will get my full eyesight back and will get back to normal but after finding out today I have permanant optic nerve damage and several brain lesions I just feel so upset and scared. I’ve had no treatment so far, I’ve got permanant damage to my eyesight and no idea when I will see a neurologist. I’m so sorry to waffle on, Does anyone have any ideas about what I should do? Or anything I can do to help myself? Many thanks

Hi Anon,

I am saddened by the treatment you have recieved by ‘professionals’ so far, this is not as things should be. Steroids may have helped speed up your recovery but they do not reverse the damage that has been done - they also don’t work on everyone.

I think you now need to look at chasing up your appointment with the neurologist. Phone the hospital and ask when your appointment has been made for and that your keen to be seen asap. Tell them you will take any cancellations that become avaliable (providing you can?) and keep pestering them, also try speaking to your GP, they may have a way of speeding up your appointment or at least talk through your MRI fingings with you, so your not completley in the dark.

The best thing you can do to help yourself is rest, try not to stress about the what if’s, take each day as it comes and keep talking to us - there are many people here who know exactly what your going through. Best of luck, let us know how you get on?

Laura :slight_smile:

I had opic neuritis (ON) with swelling where the nerve leaves the retina so got the dx at the first opthalmology appointment. I wasn’t given steroids either, but Intravenous steroids just speed up recovery with no affect on final outome (oral steroids actually make the outome worse). I was told the normal course is for the on to be at its worst 1 or 2 weeks after onset, definite improvement after about 1 month and the more improvement (getting slower) upto about a year. (I had some [very small] improvment after 12 to 18 months).

Isolated ON is classed as a Clinically Isolated Syndrome (CIS) so not multiple sclerosis and there’s 50% chance of it not developing into MS.

Many MSers take vitamin D supplements as it is difficult to get enough sun in the UK. It may help with MS and is necessary for bone and other health matters. There is some weak evidence that it helps prevent CIS developing into MS, Smoking increases the risk of MS and possibly makes it worse. But it isn’t understood.

I think NICE says that the wait to see a neurologist should be less than 6 weeks. Where I am the waitimg time is more like 11 weeks. You should get a letter that you on the list, at least, so I’d ask the opthalmologists if you don’t hear soon.

Otherwise follow Laura’s advice - rest and be kind to yourself.