Forum

Optic Neutisis help please.

Hi everyone,

im looking for some help. I got diagnosed with ON 4 months ago in 1 eye. My GP then refered me for MRI for suspected MS. A story in sure you all know well.

Anyway way long story short. My eye has still not recovered I have had my MRI of head and now eyes and am waiting results.

My reason for posting. My sight has been up and down in that 1 eye for the last couple of weeks (I wondered if it was returning is this possible?) now the last 2days my other eye has started with the same symptoms. Not as severe yet but blurriness that comes and goes. This is how my 1st eye started then lost all sight for 4days.

My GP says(I have called 3times over the last 4mths for som horrid reasons including losing the feeling in the whole left side of body)he cannot do anything until scan results and it sounds like a migraine.

So has anyone had OP and its moved into the 2nd eye? I have also has some horrid (worse than normal) headaches this week, lots of neck pain and more numbness on 1side of my body. Do you think I need to call GP or something else?

Mim lost what to do as he was great when I first went in with this then he just keeps brushing me off and says just wait. I don’t want to be a nuisance but I also don’t want to leave something that can be treated (I know steroids do not change the outcome of ON) but as my GP diagnosed it there is also a chance it is not ON is that right?

Sorry for all the garbled questions but look forward to the feedback

Sammy, has your GP referred you to a hospital neurologist and/or opthalmologist? It would, on the face of it, be a wee bit surprising if this had not happened yet, given the nature and severity of your symptoms. Unusual in the UK, anyway, but maybe you are not from the UK. Anyway, in your shoes I think I would be looking for a hospital specialist referral sooner rather than later.

And yes, I’m afraid ON can come back. However, I think it is pretty uncommon and very unlucky to have it in both eyes at once, but it is certainly not unknown. But I think most GPs would be considering an urgent hospital specialist opthalmologist referral to exclude potential other causes for your visual disturbance. Again, it is a bit surprising to me that this is not happening. However, your GP is a medical professional and I’m not, and your GP knows you and your case and I don’t, so it would be wrong of me to suggest that your GP was being a bit slow off the mark - even if that was what I was thinking!

I hope that you get some clarity soon about what is going on.

Alison

Hi Alison,

i was was referred to a neurologist which was a 8week wait. When I saw her (the neurologist) she asked why I didn’t get treatment sooner. I explained the GP said to wait to see her. She just tutted.

I am not a usual visited at the GP but have been 4tumes in the last couple of mths. And had 2calls. I also had an ambulance as I had a seizure (from what I was told) and was found on the floor. The paramedics said they thought I had a viral infection and to see how things go.

I feel I should chase it up as I have approx 80% of vision in 1 eye and not approx 60% in the other. I once again saw the GP and was told he cannot do anything until my neurologist is ready and to just wait. When I mentioned how much pain I was in (I have spoken to the chemist and he cannot give me anything stronger) he again said to wait. It has been a long few months but I feel a nuisance going back to the GP as I feel like they won’t help until my results are in.

I suppose this is the start of a possible long journey

thanks again

Sammy, I am sorry you are having such a horrid time. I am pleased to hear that you have had a neurology referral from the GP and have seen the neurologist - it is good that you are in the system.

I take it, therefore, that it was the neurologist who commissioned the MRI scan? I know you are fed up beating a path to the GP’s door, but I do think it would be good if you had a clearer picture of what the GP (and the neurologist) saw as the next steps for you. Typically, by the way, what tends to happen is that the neurologist leads and just keeps the GP in the loop in terms of sending letters to report on progress, advises on anything he/she wants the GP to prescribe or whatever. Normally, once you are in the hospital specialist system, it is the hospital specialist takes on prime responsibility for your care in that particular area (neurology, in that case). So, what would normally happen would be that the neurolgist would want a follow-up apopointment with you to discuss the MRI findings and any other tests required. The only time this wouldn’t happen would be if the MRI showed nothing and the neurologist thought there was no basis on which to pursue it further and wanted to discharge you from her care and hand you back over to the GP. In any case, your GP remains primarily responsible for your overall general care, whatever happens.

But I’m just talking generalities - you want to know how all this is going to play out for you, and that is a perfectly reasonable thing for you to want, so don’t be shy asking. Your GP is a good place to start, and the neurologist’s secretary is another option.

Alison