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Optic neuritis - help!!!

Help, I have had really bad optic neuritus pain like someone piercing my eye from inside my head.

I rang the MRI department to find out the date my MRI had been booked for, I had previously received the appointment but had mislaid the letter. I was advised that I haven’t in fact got an appointment assigned to me.

I have been unable to get through to the ms nurse team, re my optic neuritis which has been constant for the last five days and also have numb abdomen so physio appointment was fun as I couldn’t feel the clenching I was meant to be doing.

Should I just go down to the hospital and ask for an MRI as this would only be my second in twelve years.

Thanks for any comments.

Nicnac

it’s entirely up to you nicnac.

you sound like you’re in a terrible state.

it’s awful when you mislay a letter and then get told that there wasn’t any letter.

as if they are playing with your mind.

good luck and please let us know how you get on.

Thanks Carole it helps to know others out there know the kind of of mind games we get dealt with, my osteoporosis referral has given me a date within 18 weeks of referral but I have to ring and arrange, whatever happened to having your appointment sorted for you.

Hi Nicnac

Why not see an optician and get them to have a look at your optic nerve. They’ll be able to check out whether there’s inflammation and also can check for changes in your colour perception. (I only found out recently that changes in colour perception were always supposed to be present with ON.) They can also check for peripheral vision, which is also often involved with ON.

That should indicate for definite that it is ON. And if so, you could arrange to get some high dose steroids from your GP (have your wee checked first to ensure you don’t have a UTI). ON generally reacts well to steroids and it may only take a few days to recover.

I would do this before going down the road of trying to get an MRI in the short term. Obviously getting an MRI sorted is a good plan, but getting your ON resolved in the shortest possible time would be good.

Check all this out with your MS nurse (assuming you can get hold of one!)

Sue

Thanks for your advice I will contact spec savers in the morning. I last had an eye test in may and new prescription glasses were purchased but I must say I have been arguing with family re colour perception, 'm very often being accused of colour blindness but my optician says most men have issues with blues and greens.

I was told quite firmly steroids are not given any more for ON as it’s been proven not to change the outcome.

The MS Trust still say taking steroids for ON is a good idea. See https://www.mstrust.org.uk/a-z/optic-neuritis Plus the RNIB says they may not make any difference in the long term, but they do shorten the relapse. See Optic neuritis - RNIB - See differently So long as you don’t take steroids more often than 2 or maximum 3 times per year, then I would say it’s worth the risk.

Sue

My neuro wont give steroids for ON.

He said a lot of the time it will sort itself out, this was confirmed by my MS nurse.

I would wait and get an appointment with your MS nurse, they can check your eyes using the colour chart scheme and if they think its ON, they can put you forward to see your neuro. You sound like you could do with a VEP test too.

I have had ON for years on and off, and the pain has always resolved itself. My MS nurse told me last year unless they get it as soon as it starts they dont recommend steroids anymore.

My last bout which was bad is finally settling down and its over 8 months.

good luck. I was diagnosed with VEP tests.

Thanks very much for that, it’s now 6 days with on then ants feeling has returned and stiffness pain in legs numbness in arms, would say definite relapse now.

Thanks again sue, should’ve known you were the one to speak to. I haven’t had steroids since 2013, so we’ll see what they say.

So with motor symptoms as well as ON, if you are happy taking the steroids, get on to your GP/MS nurse, get your urine tested and get a prescription. If you’ve not taken them for several years, they might work perfectly. I just had a relapse and took steroids for the first time in a few years. Within days, my legs felt loads better. In fact some of my symptoms that I’ve had for years are mildly improved.

It can’t hurt, apart that is from the horrible metallic taste, feeling jittery and not sleeping, as well as the feeling afterwards like you’ve been punched all over by Nicola Adams.

Sue

Thanks sue, I rang 111 today, then saw gp, he rang hospital for me and arranged for an ms nurse to call me tomorrow I then have to see the opthalmologist at the hospital to run some tests.

I quite like Nicola Adams so would probably let her know her Olympics was so inspiring.

Update I don’t have neurotic as only old damage is showing up, have tests for field vision booked for next week, headache still here. Continent touching it, am ringing ms nurse tomorrow.

I typed neuritis not neurotic.

I typed neuritis not neurotic.

Continent is meant to read Codeine not touching it.