This Is MS Multiple Sclerosis Knowledge & Support Community

I am fairly convinced that I have optic neuritis again but in my left eye this time. I have had pain on movement and a noticible change to my vision (blurriness) for a couple of weeks and have now reached the point where the pain is constant and the accompanying headache is no better.

Unfortunately as I still have not had a dx or have even met my current neuro I don't know what to do. I am due to see him on thursday but since my last 2 appointments were postponed last minute there is no guarentee. In addition the pain is pretty much constant - within mins of getting out of bed today I had a headache (that I associate with ON based on my previous ON). I just want to make it go away but I don't know how or what to do. Last time I had ON it took weeks to get a referral from my GP and they didn't give me any treatment anyway. This time I am in a different NHS trust but I don't know what they do.

Any advice would be appreciated - especially from those with NHS experience.

Hi MrsGeorge,

I believe that if you've had it for 2 weeks already they'd tell you it is too late to treat it with steroids at this point, and I don't know of other treatments for ON.

I hope you feel better soon.

thanks - the joys of being under the NHS and never being able to see a doctor in reasonable time for anything! It's only been this bad for about 2 days but I have been wondering for a couple of weeks if it was ON developing.

Hi there
yes, i,m a Londoner and in the nhs system. I've had ON a few times over the last 20 years and received treatment neither time. Each time it subsided over a few weeks. Fortunately, no pain on any occasion and eyesight not adversely affected once the initial symptoms of ON subsided. If you want to know for sure and are unhappy about waiting for a referral from your GP to see a neurologist then you could always think about asking an optician. Mine can see some scarring/paleness on the back of the eyes as a result of the ON. If you tell him/her your suspicions perhaps they can provide some info altho am sure they will tell you to get to a neurologist sap.
muu

Hi there

I was brought up in the UK (no longer there though) - how about going to your closest A&E, giving them a brief history, and explaining about your ON - it could be seen as an emergency - worst case, folks have lost their sight - and I am sure they could give you some high dose iv steroids to help you along. Otherwise, is your GP not kitted out to do some iv steroids in his rooms? Or he could even give you oral steroids, though I don't believe they work as well, they are better than nothing.

I think it is important that you get some help, and it must be so frustrating to have to wait and be uncertain when a scary thing like this happens. I realize that it might be mild, but treatment might help.

Best of luck.

Thanks for your replies.

I finally managed to get hold of my GP today who sent me straight to the eye casualty at the local hospital (i left work without telling my manager cos he wasn't there - eek). Anyways - I waited an hour and then got to see a nurse who made me read a letters chart (and I did way less good than normal) and flicked a penlight at my eyes from a short distance for maybe 30 secs and then told me that she didn't think it was ON as the symptoms were wrong (the exact same symptoms as I had last time I had ON). And anyway (she told me) they already had 10 people waiting to see the morning doctor and there wasn't an afternoon one - so she made me an appointment to come back tomorrow at 11am (odd cos she told me it wasn't likely to be ON but she was concerned enough to put me in the first available appointment).

I now need to get more time off work - I only started this job last week and I have been out of the office more often than I have been in!

I'm sorry you are having to go through this. It is my understanding that a doctor has a special instrument which can see the optic nerve. I thought that was the only way ON could be diagnosed. That is probably why she made the appointment for you to go back tomorrow. At least you have that! But she should have made arrangements so that you could have been seen today. How frustrating!

I got the dx of ON today - just got back from the hospital. He is not giving me any steroids etc as 90% of cases clear up without treatment. If there's no improvement when I go back in 2 weeks then he will look at drugs.

Does this count as a relapse? Or is it just one of those things?

.

Lyon wrote:

MrsGeorge wrote: It's probably considered controversial because some don't consider ON a direct result of MS

really?

any links to more on this viewpoint? i'm curious.

.

i see. that makes sense. but then again, by that logic many syptoms of MS are circumstantial

the main reason this surprised me is that I've spoken to a number of people who were diagnosed when their ONLY symptom was ON (+ a positive MRI).

.

It is frustrating to read your post. Everything you describe in terms of symptoms and your MS screams "OPTIC NEURITIS HERE!". Aside from being in London for a week and loving every bit of it, I have no experience with the UK or the UK's medical system. That being said, it seems that you are not receiving the prompt treatment that you need. Yes, the ON is a relapse. There is no reason to assume otherwise. You need quick treatment with IV and oral steroids to stop the inflammation as quickly as possible to shorten the course of the inflammation and to hopefully lessen the permanent damage to the nerve that it can cause.

I am glad you are receiving treatment now. Good luck, and if this reoccurs in the future, pester your medical care providers and get treatment

Grumpster here, I have wicked ON and it has gone fromm one eye to the other and never fully abated. You need steroids as soon as possible, not in a couple of more weeks. They only work during active inflamation and may prevent optic nerve scarring and permanent vision damage. I wne through the same type of BS here in the US with my HMO before I was actually diagnosed with MS. Be persistant. I threatened legal recourse before they said ok with the steroids and the roids did help. Waiting may cause serious damage. I know I have permanent damage in both eyes and the headaches I attribute to times when it is real bad are enough to sink a battleship.

I wish you the best. Your tale is a good argument against nationalized healthcare as two of the presidential contenders here want. ON is my worst symptom and I hope your's is one of the ones that go away completely in short order.
G