Hi, I hope you don’t mind me posting because I do not have a diagnosis of MS. I have had a history of weird neuro symptoms though - sensations of weakness, jelly legs, weakness in my face and tongue leaving my smile lopsided (which is blatantly obvious to me and my family but the doctors don’t seem too worried about) feeling of weakness in left foot when on tiptoe (it gives), buzzing sensations on fingertips, scalp, thigh (like an Ann Summers purchase being held to my skin - lol) periods with breathlessness which my rheumatologist said sounded like my muscles weren’t strong enough to get full in breath… Also lots of twitching of my muscles and weird things like my thumb twitching side to side for ages. Anyhow. Just before Xmas I was sent up to the eye infirmary a and e by my optician, because she was concerned I had glaucoma. She thought this because I had told her about a pain I have been experiencing in the back of my left eye, which I thought was eye strain. Also because she noticed that this eye was not responding properly to light like the other pupil. The doctor I saw there did lots of checks and ruled out the glaucoma, but she did notice the problem with my pupil reaction (she was swinging the light from one eye to the other and said to the student, see how this one dilates briefly) so I asked if this was abnormal and she said yes. She also seemed very interested in the fact my eyes hurt more when I looked up and when I looked up and right. She couldn’t complete all of the tests cos I’d driven on my own so I was brought back xmas eve for more tests on my vision and saw a different doc. She told me that the tests on my vision had come back normal. That the previous doctor had believed I had an inflammation in the nerve, but that there were a couple of things that weren’t classic about it such as the lack of vision problems, and also the fact the pain had been going on a while (it did peak a little around that time, but I have had it on and off for weeks - and still have it most of the time each day now). So she said she wasn’t convinced and they would see if they can find another cause like eyestrain. So she has booked me in to see the orthoptist, the optician, and have a follow up appointment. She also told me this pierce thing can be the first sign of MS so not to be alarmed if I look on google. So I am obviously worried, especially with my history of weird symptoms, and wondered if it sounded like this inflammation to those of you who have suffered it, and also if you have any advice for me in terms of either keeping the pain to a minimum, how long it may last? Thanks so much for your help…and sorry for the looooooong post - didn’t want to miss anything important. Leah
Hi Leah I was diagnosed on Wednesday with Optic Neuritis. At the beginning of the week I had a little blurred vision in my left eye. It became to stay longer for a few hours at a time and now it’s always there.I went to the opticians who did some test and then sent me to the eye specialist at my local hospital. The hospital did some other test and confirmed I have Optic Neuritis as my depth perspection isn’t right, when I move my eye up and down, left and right I get a slight pain aswell when I look at certain colours they are more washed out in my left eye. I wasn’t given any treatment as my right eye is affected and the specialist advised the steriods only speed up the recovery so as I have one eye fully functioning I wasn’t eligible for these. They advised my sight will return to normal in the next few weeks. I’ve to go back in one month to check if it has improved. I have already been diagnosed with MS so do believe it was easy for them to diagnosis me with Optic Neuritis as the specialist advised me it’s quite comman with MS patients. Polly x
Right eye isn’t affected. Said is on my earlier post. Polly x
Hi Polly, thanks for your reply. It sounds like you have had something more classic for Optic neuritis - they said they would normally expect there to be some loss of vision or colour problem but it seems like there is nothing. Do you still have the pain too, or just the vision loss? Leah 
Hi Leah It’s only a slight pain when I move my eyes so it’s not there all the time. It’s the blurred vision that most annoying but hopefully it will die down over this next week. I hope they find out what’s wrong with your eyes. Take care Polly x
Hi Polly - same with me. The pain isn’t there all the time, but when I move my eyes up or up to the right. It does hurt at other times occasionally but realising that perhaps I just don’t know that I have looked up or right. Hope things get better soon for you, and I do appreciate your replies… Leah
Honestly, symptom-matching is not a very reliable diagnostic tool!
The thing I would be doing in your shoes would be to keep/make a careful note of the various episodes of strange stuff that have been happening. When did it start, how long did it last, did it come and go suddenly, did it come on and go away gradually etc. And then I would want a review session with my GP to talk it all through and see what he/she thinks. Most likely the GP will say that there is nothing that needs immediate attention, so let’s wait and see what, if anything, comes out of the eye appts that are in the pipeline (and waiting and seeing is usually very good advice and not, as some people tend to view it, some sort of cop-out), but at least you will know that it is all on the record, so there will be some context and a note on the file against which to view anything else strange that might come up.
That done, I think it is a matter of steeling yourself for some patient waiting. I hope that they eye troubles clear up quickly for you.
Alison
Hi, I had this last summer. Pain in my right eye when I moved it but no loss of colour and only slight loss of vision (like I had been looking at sum too long) after loads of tests and neurologist appointment a few months later optic neuritis was diagnosed. But keep a record of every time something happens and how long for. Hope your eye problem gets sorted. Sam
Hi, I have had two episodes of severe eye pain without obvious visual problems in the last couple of months. In fact, I have just logged on as I was going to post a similar query (and will post something seperately as don’t want to hijack this post). I don’t have an MS diagnosis but have a history of symptoms that could be MS related - so my response here could be irrelevant.
When I went to the GP about my eye pain she asked if it was like tooth ache but in the eye - which was a perfect description. She queried temporal arteritis (another cause of optic neuritis) but a blood test has ruled that out. So, I am also wondering whether the pain could have been optic neuritis without obvious visual problems. My vision is slightly blurry but I think that might be because of increasing long-sightedness with slight short-sightedness. Having said that, my reading glasses do just seem to enlarge the blurred image rather than making it clearer - would that count as visual problems? I think the blurriness is the same with both eyes but the pain was in my left eye (with just a brief episode of similar but less severe pain in the right). I had a headache over my eyes for about 2 weeks on each occasion, with the eye pain occurring on several days in that time.
Anyway, don’t know if this post helps or not - but maybe just another account of something similar.
Hi, did write a lovely long post yesterday, but it seems not to have saved. 
Thanks though for all your replies, it’s so helpful hearing about others experiences… Alison - I know you are right, unfortunately patience is not one of my strengths, so it’s hard. It’s also very painful and so it causes me a lot of problems day to day, so just trying to do everything I can to find relief. Sammyj - that sounds a bit like me, can I ask what you mean about vision like looking at sun too long - do you mean like when you can see the dark outline of the sun wherever you look or something else? That definitely doesn’t sound like me - there is no obvious problem at all with my vision, except transient things. I know with me I had several tests and the only abnormality in my vision etc. was my pupil reaction (they said it dilated briefly before constricting). Though I have felt like my vision has been odd for ages, I went through a period a while back when my vision kept looking like it had Vaseline blobs on it when I was reading but it didn’t stay. Lilacgirl, it does help - it sounds like you have similar issues to me, I don’t know if mine feels like toothache, because I have never had one. When it’s at its worst it does feel like how I imagine a toothache must feel, and at other times it feels bruised and swollen, particularly when I look up and to the right (towards my nose). The main difference for me is that it is there all the time pretty much - mostly can ignore it though, but before Xmas when it all kicked off for a week or so, and over the last few days, there have been “peaks” when it has been difficult to cope with (and I am good at coping!). Thanks again, keep me posted! Leah
Hi all just wanted to update: I saw the ophthalmology consultant today and she confirmed that they are certain I have had a bout of Optic neuritis, which is now resolved. So even though I couldn’t see any difference in my vision the clues they needed were there. She is pleased I am going to the neurologist and would like me to have an MRI of my brain done. Though I am not pleased to hear that this is the problem, I feel like I have been well looked after. So just a waiting game now for the neurologist appointment and results… Leah
Hi Leah,
I sometimes have episodes of retrobulbar optic neuritis, which means that the inflammation is behind the eye, so it doesn’t show up in an eye exam like optic neuritis (unless there is clouding of the retina). It makes it painful to move them, and although my vision is fine, they become very light sensitive.
It’s not always caused by MS, but I’m glad that your consultant is looking after you and I hope you get some answers soon.
Mags xx
Hi Mags, Thanks for your reply. I am so glad you posted that because it filled in a few gaps for me, I didn’t understand that there were two types of ON and so it’s didn’t make sense that when I googled it that all the explanations were talking about vision loss which I didn’t have. The doc does seem certain though. She said the first doctor I saw before Xmas had noticed a pupil defect, and also a blurring margin (don’t know what that means! Lol). And those were more important than vision loss to diagnose. Or something along those lines. I have a horrid feeling it is MS now the ON has been diagnosed because I have some spasticity/low level cramping in my calf causing drop foot too, which also seems to be classic MS. I wish I was a more patient patient - I would rather know now even if it is the worst so I can get my head round it and move forward… But guess I’ll have to wait
Hi Leah
Thanks for posting your update. I’m sorry to hear that you have been suffering from ON but I’m interested to hear that you received the diagnosis without obvious visual problems as it makes me wonder again if that is what I had around xmas time. I’m just like you in another way too - I would really like to know what’s wrong now, even if it is the worst! I’m not very patient either and am putting far too much emotional energy into wondering if I do or don’t have MS. I’ve got a GP appointment next Tuesday and am going armed with a letter from my osteopath saying I should be referred to neuro, so maybe I’m getting a little closer to finding out if MS is even a possible diagnosis given my symptoms.
Best of luck with the waiting game. I’ll look out for your updates on the forum.
Lilacgirl x
You’re welcome hun (I only know because I was at the opticians on Monday and asked him ;-)). xx
Hi Lilacgirl, Does sound as though we have had a similar thing then, I was lucky I saw an optician who spotted something wasn’t right and sent me up to the eye hospital a and e otherwise I don’t think it would have been taken seriously. Interestingly I have been seeing an osteopath recently too! she is the one who told me that my reflexes are brisk, my weak leg isn’t weak it has spasticity which is stopping it working properly etc. I am due to see the GP next Friday, so I will be doing the same thing (though they have referred me already). So we wait together and see what happens…let me know how Tuesday goes… Leah