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2nd attack? Freaking out!

Hey I had my first attack of Optic Neuritis about 6 months ago which was dx as a CIS with a handful of lesions. The Optic Neuritis has cleared, almost full vision and no pain at all - although I’ve been left with twitch and altered sensation. I was assigned an MS Nurse to call and discharged with instructions to return or call the nurse if I had any other suspicious symptoms. I’m freaking out today because I’ve woken with a moderate to mild pain in the same eye, the same or similar to the last episode and pain on looking up. Is this the 2nd dreaded attack or is it common to have some intermittent pain with past optic neuritis every so often. I guess the only way to know is to wait and see how it develops, but I’m driving myself mad. I was lucky to I ly very mild sight loss last time - I probably won’t be so lucky this time. Also, obviously - if its returned, then it’s an MS dx. Finally I’ve read some bits saying only a 6.4% of reccurance in same eye, and others saying its common?

I can’t tell you how common it is for the same eye to be affected, but I’ve certainly heard a fair few MSers say it.

It is very common for viruses or infections to exacerbate old symptoms so there is a chance that you are coming down with something or perhaps have a urinary tract infection (they can occur without any signs). It would be worthwhile getting tested for a UTI - if it is this, you would notice a difference in your symptoms very quickly after starting on antibiotics.

If it is a relapse, then there is no reason why it should be any worse than last time and, even if it is, the fact that you recovered well last time is a good sign and suggests that you will recover well again.

I recommend that you give your MS nurse a call in the morning, see your GP about a UTI test and rest as much as possible. It would probably be sensible to see an ophthalmologist too (your GP can refer you to a walk in clinic so you don’t have to wait).

Fingers crossed for a UTI and a quick recovery!

Karen x

Thank you Karen and will do. I’m clinging to the possibility that intermittent eye pain could be residual damage of Optic Neuropathy? Have you come across this? Is it possible do you know?

I’ve never had ON so it’s a bit of a weak area in my knowledge. If it’s like other symptoms, then it might be temporarily worsened by heat, virus, infection, stress, fatigue,…, but if it’s happening without any of that, then chances are that it’s a relapse :frowning: Kx

Hi MGW, I’ve had optic neuritis 4 times over the last 3 years. The first time being the worst - I temporarily lost my sight in the affected eye for which I had IV steroid treatment. I’m just recovering from another bout which my GP gave me oral steroids for. Steroids don’t help everyone and you can have side effects, but my personal view is your eyes aren’t worth gambling with. It’s always my left eye which is affected and the first bout of ON left me with residual issues - like the eye twitching for example - but it can affect people differently. As Karen said, it’s worth contacting your GP or MS Nurse if for no other reason than to err on the side of caution. I hope things improve for you soon. xx

This has really taken me by surprise and not panned out at all as I’d imagined. I guess I’d better get used to that!!! The pain started on Sunday and I was certain I was “for it”. However - the pain hasn’t got any worse but has got better in 4 days and I’ve had no loss or altered of vision that I’ve noticed so far. A total opposite of the first occurrence. Only thing I’ve noticed is a massive increase in twitching. I phoned the UCL Neuro Line as I was told by neuro and I’m being seen by registrar on Friday. On a side note, there must be a real lottery going on in the NHS? I phoned on Tues and will see him on Friday? I read of people waiting months to be seen every time. This seems very unfair!!! I still wonder if this could be part of the original attack. There’s no doubting it is optic neuritis the pain on eye movement etc etc, but I expected to lose my license if I got it again, but so far - it has been milder than I could ever imagine. I thought it was going to be a disaster. Obviously the consequences of me having it a 2nd time make it multiple though?? :frowning:

Hello MGW

I hope things are OK with you. I was reading your thread and interested especially in one line - “There’s no doubting it is optic neuritis the pain on eye movement etc etc, but I expected to lose my license if I got it again, but so far - it has been milder than I could ever imagine”

I had my first ON 5 weeks ago tomorrow - never had any symptoms in the past so not yet diagnosed, although lesions show up etc. etc. I’ve looked at licence - and wonder what you knew about losing your licence - have you been told that by Neuro or GP etc, as my understanding was if you have one decent eye you should be fine. That’s only on my research through DVLA, not actually spoken to anyone.

Also very impressed you are being seen so quickly. My experience of NHS in Bristol has been amazing. A&E first, Eye Hospital following morning - then away on holiday in Morocco for ten days where I went blind in the one eye - back to Eye Hospital for follow up on return, urgent refer to Neuro and done and dusted, including MRI in 4 weeks, 3 days. Unbelievably good treatment.

i hope things go OK for you.

Sam

Hi

I’m not en expert, I’d read that you lose it for 6 months whilst your eye(s) adjust. I don’t know if there’s a possibility of getting it back if you only have sight in one eye, I assumed not, certainly not a night. It’s not something I’ve had to look into just yet (thankfully), I’m praying to god I never do. I’m almost braced for anything that an MS dx would bring me, but losing my license would probably about as devastating as it could get for me personally I think.

OP if the vision hasn’t deteriorated it might not be ON again. Pain could be caused by eye strain or something.

I had ON last year in my left eye and got it again this year. Both instances started out with a decrease in my vision. Last year I almost totally lost sight in my eye for a while but got it back more or less 100%. This bout doesn’t seem as bad, the vision is cloudy but I still see colour etc. and I have no pain.

I’m in Ireland but I’d say it’s the same. I had to return my existing licence to the Driving Licence Authority with a medical completed by my GP who gave me a 12 month go-ahead (options for here are 1 year, 3 year or 5 year when you have to have a medical). So in 12 months I’ll have to go back to the GP to get another medical and another licence.

The ON didn’t seem to have any bearing on her decision as my right eye is fine.

I’d go to an optician if I were you and just see what’s happening with your eye as it might be something totally different. I’m no expert but the fact that your vision is ok makes me think it’s not ON based on my own experiences but of course, everyone is different.

PS Rubina, just to let you know that my GP also perscribed steroids for my ON and my neurologist was not happy. Apparantly studies show that people who get oral steroids for ON are more likely to have it return. He said that for what we are trying to deal with, oral steroids can’t be given in high enough doses, that IV steroids are the main tool to battle relapses and that if I were to be taking oral steroids it would mean I wouldn’t be able to have IV steroids soon after so basically to avoid oral steroids at all costs.

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/visualsymptoms/optic-neuritis/index.aspx

Intravenous steroids are used because people treated with oral steroids in the Optic Neuritis Treatment Trial appeared to have an increased risk of recurrence and did not do as well as those who received no treatment.

Obviously, I hope you are correct. I don’t see it being any other kind of thing though given the pain was identical in feeling and the twitching and other “things” have gotten worse with it. Is it not possible that the “damage” has occured within the threashold of the residual damage of the last attack?

Obviously very much hoping that I can avoid it being a relapse, but just trying to be realistic and honest with myself.

Hi Meme, I saw my neuro about 10 days or so after finishing the steroids, and he was fine about my GP having prescribed them. My first bout of ON (several years ago) was far more severe (lost the sight in my left eye) and I was treated with IV steroids. Since then I’ve had it a further 3 times - only this time round did I have oral steroids for it. I guess like most things connected to ms, it varies from person to person, but thanks for the info. Debbie xx