More than a bit frightened right now


I’ve not posted for ages but would really appreciate some help & words of wisdom right now.

I’ve had problems getting diagnosis in spite of 2 huge flare ups of symptoms because I can’t be MRI’d due to a defibrillator in my chest. The 2 lumbar punctures I’ve had have come back negative.

In the last couple of months I’ve developed some frightening symptoms, choking from swallowing difficulties & now the worst optic neuritis I’ve ever had (I now recognise the symptoms from before). Yesterday after having severe eye pain over the whole weekend I was sent to the local Eye Infirmary & saw an Opthalmic consultant who told me that I have bad optic neuritis associated with MS. She wanted me to start on intravenous antibiotics for 3 days to minimise the damage to my right eye (I already have quite a bit). She then sent me straight to see a neurologist who agreed with her .However once we discussed the steroids we decided against it as they could worsen my cardiac condition by dropping my electrolytes.

Then he dropped the bombshell. He came straight out & told me that the neuro team that have cared for me for years think I now have relapsing/remitting secondary MS.

So I’m here with a very painful eye that’s burning, light sensitive & feels like it’s being stabbed with a knife & needles. At the moment I’m almost blind in my right eye apart from a tiny circle of clear vision in the middle (the muscles in my eye have not been working well for years because of previous attacks & I have double vision in low light) & my left eye has lost it’s depth perception & right field vision .

I’m scared I’ll loose more sight especially in my ‘good eye’ & not have any treatment at all.

I would so appreciate hearing from any of you have had these problems as I know so little about the optic neuritis & what it can do.



Hello Suzy and welcome,

you poor thing, I to have suffered with optic neuritis and I feel your pain. Have you seen an ophthalmologist? When my eyes were very painful I was given injections into my eyes (sounds awful, but not so bad) which took the pain away and stopped me from going blind. This was years ago so maybe they don’t do it anymore but it may be worth asking if they could do it for you. Unfortunately each time you have an attack it damages your optic nerve hence as you know decreases your vision. May I suggest you go back to the eye hospital and push for more treatment. As I don’t know where you live the best hospital you could ask to be referred to is Moorfields eye hospital in London. If you are worried about distance they supply free transport and they are brilliant. Don’t give up hope. Good luck.