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Migraine following eye test, and numb tongue!

Hi, bit of a strange one this.

Had an eye appointment at hospital on Wednesday, where they confirmed bilateral optic neuritis (worse in right eye, which was already diagnosed but now showing in left as well), and part of the test was dilating the pupils with drops and shining lights into the eyes. I suffer the occassional migraine, and boy, have I had one, Its just easing off enough to write this. One thing thats worried me though is that I’ve had a prickly/tingly upper lip, and numb tongue. Never had this with a migraine before, and also wondered if anyone eklse has had a headache/migraine following eye exams? Waiting for MRI and neurologist appointment, but another thing, I have Uhtoffs syndrome associated with the neuritis, which my consultant said was a bad sign (!) as more likely to have progressive MS. Anyone heard this? I’ve still got blurry/patchy vision, after the initial attack back in April, which he also said may not get any better than it is!

Any advice/reassurance greatly appreciated.

Thanks x

Hi Hunny.

I don’t know the answer for sure, but I would have thought that it was pretty common for people to have headaches and possibly migraines after eye exams, especially when their pupils have been dilated and even more especially if you’ve got ON as well.

If the tingling lip and numb tongue went with the headache, then I guess it’s pretty safe to say that it’s part of the migraine, but best to tell your neuro when you see him/her. I once wrote off tingling lips as a side effect of something I was having done on my back (it wasn’t) - perhaps if I’d told a medic I might have got my diagnosis two years earlier!

Uhtoff’s is definitely not confined to people with PPMS - I know RRMSers who have it too. Whether or not you have PPMS or RRMS (or something completely different!), only time will tell I’m afraid. If it is only your vision that is currently affected, it is definitely too early to make that call.

I can’t really tell you how well your vision will recover either, sorry. The ophthalmologist is the expert there without any doubt, but I bet that he is not 100% confident that you won’t still get some improvement - demyelination is just not that predictable!

Hth - sorry to not have all the answers.

Karen x

Hi Karen

Thank you for your words of wisdom (again!). I thought it was a bit extreme what the optho bloke said, but maybe he’s just giving me the worse case scenario, so it can only get better,(at least hopefully no worse) right?!

I’ve had a run of horrible other symptoms too, bladder, bowel, and legs, for a few weeks, but have to say they seem to be improving, first really troublesome symptoms started last November, lasted a few weeks, came back, with eyes and back as an added extra in April, went away, (apart from eye thing) and came back with a vengence early September. You may remember I was diagnosed with ME years ago, which gradually improved leaving only periods of real exhaustion and a propensity for picking up every germ going, so I tried to write off much of what I’ve been experiencing as a hang over from that, but, alas, the eye thing seems to have set off alarm bells all round now, with my GP having a bit of a panic that they may have got it wrong all along…

I will be sure to add my lip/tongue thingy to my ever increasing list of niggles for the docs! Blimey, I’ll need a long bit of paper!

Karen, thank you again, I read a lot of your posts/replies, you are an inspiration, and I do hope you are starting to feel a bit better and the rebif gives you a new lease!

Best wishes

Hunny x

I don’t want to mislead you Hunny - another bout of ON will make it worse. Hopefully it will recover again, but there’s just no way of knowing :frowning:

The fact that things come and go suggests RRMS, but I suppose it also depends how you are between times and whether or not you are worse now than you were a year ago. I’m sure the neuro will work it all out - they’re the experts after all!

One thing - at one point my diagnosis was changed from RRMS to SPMS, but then when I gave up work and my MS stabilised and improved, it was changed back to RRMS. Last year I was convinced that I’d finally switched to SPMS, but after a year I finally hit remission again, so I’m actually still RRMS. Basically, sometimes other stuff gets in the way so it’s hard to see the truth.

I hope you get some answers soon!

And thanks for the kind words - I really appreciate it :slight_smile:

Karen x