optic neuritis/nystagmus..feeling abit lost and in limbo..

Hi everyone…finally plucked up the courage to post on here…lol

I have had optic neuritis for about two weeks, loss of some colour vision,some pain etc but not seen as severe at this point but unable to drive at present. I went to the A&E eye dept and was seen by an eye person and then seen in neuro eye clinic a week later…they have confirmed On in my left eye and also I think nystagmus in left eye(up and down) and in last 3days same in right eye(left to right eye movements)…had an MRi scan yesterday so now waiting for an appt to go back to see neuro eye person. My vertigo seems worse and they thnik that is related to my brain not a slipped disc in my neck (2010)…The first eye person mentioned MS as a cause of ON but the neuro eye people are not being specific on that …saying the will be looking for" inflamation in the brain" but not a brain tunour(phew)…

I had a rta in 1994 which left me with walking probs left leg…1998 developed retention of urine…and had 2 serious kidney infections,started intermittent self catheterisation in 1999 but struggled due to spasms which use to hold onto the catheter for hrs but also pelvic floors muscle aslo used to spasm. Sio I had a mtirofbnoff stoma done by my belly button and do SC from there…made a huge difference to me and my life! I ahve used a wheel chair since 1998 after rehab physio didnt work and I got worse. 2010 sever neck pain, spasms and stiffness and mri of neck showed a slipped disc C4/C5…vertigo started about the same time too… I had arm weakness and kept dropping things etc couldnt grip things well athough MRi showed no inpingement of nerve root…but poss inflamation…

I have been out of the system from 1999 till 2010 and just tried to get on with my life and the last few yrs have been tough and my energy levels low…so I am wondering if in fact I may have had MS for some time …its only now with the ON that they are looking into things more which I feel is positive and before now would never had even considered I may have MS…??

Sorry am typing using one eye here so please excuse any errors…last 14 dys have been tough and am more tired as a resuly of relying on my weaker eye to do all the work…my left one has gone lazy when usually its my right(which has become more lazy most of the time in the last 2 yrs)

whatever the cause of this it needs looking into and should I sggest a referal to a neuro consultant? at eye neuro follow up…??


Hello, and welcome to the site

Well done for posting too - I know it can be a bit daunting at first!

It’s entirely possible that you’ve had MS for a long time - many of us look back once we’ve been diagnosed and realise that stuff we’d written off as viruses or trapped nerves or… were actually early symptoms. Of course, it’s also possible that you don’t have MS, but ON + nystagmus + vertigo + urine retention + the 2010 symptoms do rather suggest it, especially given the “possible inflammation” in your cervical scan. I wonder why you weren’t referred to neurology at that point? Does seem like someone missed a trick

MRI scans for ON don’t always cover the whole brain and even if they do, they don’t necessarily do it sufficiently for a proper investigation of MS, so even if it only shows up inflammation in the optic nerve I would still be asking for a referral to neurology if I were you. It also seems sensible to see an MS specialist. You can use the “Near me” function on here to find your nearest one - that will give you a name to ask for (most GPs wouldn’t know).

Hopefully you’re not a million miles away from getting some answers, and more support

Karen x

Hi Karen

Thanks so much for your post and support…its a baffling time…my last MRi brain was in 1997 and it was normal…I had it due to some cognative probs flagged up when at rehab untit and due to the closed head injury in 1993 and 1994(rta) they wanted to check this…it was also here I found out I had been given the wrong height walking stick which was 2inches too short…not great!

Yes I am surprised that the consultant physios I saw back in 2010 didnt perhaps want me to see a neuro and becuase my gp said it would be quicker to get them to refer for mri of neck she didnt refer m,e to a neuro at this point. I have been practicing standing as the physios had adv this(re my neck) but my balance is crap…if I close my eyes I get very disorientated./unbalanced.and allot of pain in my lower thorasic spine…which shows mild arthritis on my xray…I have not walked for a long time…and I think in some ways using the wheelie already perhaps makes it harder to asses me from a neuro pint of view re physio…the problem with the physios is they would only look at my neck back in 2010…would not consider me as a whole unless I got another referal from my gp!

So the rta perhaps is not good as people have just assumed that is the cause of my problems when infact it may not be…back in 1994 they half heartedly considered MS EVP of my legs suggested a slower reaction in left(bad leg) but not considered significant…MRI of spine at that point revealed a partial leasion, smorls nodes in lumbar spine, an extra vertebre in spine and a deformed one too about waist height. I didnt have a lumbar puncture back then…and was passed onto another dr…

All I can tell you of the MRI I had yesterday was they didnt do a specific view for optic nerve casue I asked…it was a general brain scan looking for any inflamation but they seemed keen to look at the cerabellem also…and they said the optic nerve would show up on one of the views…


I can imagine the chair and the RTA must confuse things

The interest in the cerebellum will be because of the nystagmus - it’s the classic symptom of a cerebellar problem.

Balance can be worked on, but best to keep your eyes open in the beginning at least

Have you thought about going to a gym? A group of us from my local MSS branch (Hillingdon) go regularly and it’s helping us a lot. One of the group is a long-term chair user (although he furniture walks and uses crutches at home) - he can now do an hour on the exercise bike and has even started using the treadmill a wee bit! Our local gym gives a discount to the disabled so it’s £2.60 a visit (carers, or friends pretending to be carers, go free).

Karen x

Hi karen…True I think it does…ahh ok re cerabellum…makes sense.eyes been bad today re Nystagmus…and i think vision in right eye is worse now…than a few days ago.(my prescription has gone back to what it was in 2009 and thats just in a week of having ON!).;-( may have to go back to eye A&E to get checked…but its not local and will have to sit there for 2hrs at least…lol

Have been having vestibular rehab therapy for my vertigo…only been doing a month…have strugled with this as the exercises bring it on badly…and neuro eye person has said to leave that for now…

I work out when I can from my chair or on the floor…physios were not keen to see me back re standing and walking until VRT had been done… also doing a deep relaxation cd every day…without falling asleep…which is hard when you feel exhausted!! lol I am quite strong and fit despite my disability but that said my strength to slelf propel is lacking…energy just goes. vertigo kick in…etc.and small things like changing a punctured tyre or inner tube my hands are not able to grip for long etc… Will look at my local pool through re swimming…I can get a pass for that…hehe.

I can find my local support group here…west midlands but cant seem to find info re neuro dr etc in this area…bit stuck on that…any ideas…maybbe contact local branch for info?

Hope your day has been ok…


I just had a wee look on the “Near me” bit of the site for an MS specialist for you - LMAO!!! - I put in Birmingham and was amazed to have no MS specialist flags on the map. Zoomed out, nope. Zoomed out, nope. Then I realised - it was Birmingham in the US! Me thinks there might be a wee bug in the software?!?!

I thought I’d try something less likely to be in the US - Wolverhampton - and 3 flags came up. So there definitely are some in the West Midlands!

There’s an exercise DVD you can get from here which is OK for chair users. Not sure where exactly it is on the site, but if you search for Sally Gunnell it should come up.

Karen x

Hi karen…many thanks for looking those up…think i have found a specialist at the city hospital, seems to be my nearest even though I am 15 miles North of Birmingham city centre…lol There is a support place though very local which would be good…should all this turn out to be MS.

Thanks too re excercise video…will look into that far have managed to adapt my routien pretty well but always good to have new ways to work re exercise.:-0 sometimes I have to break it up and do as and when I can manage…lol and often have to push myself but its worth it in the end…to keep in shape…

Hi, just thought i’d pop into your post and say i had my evoked potential test at city hospital so you maybe right about that being the specialist hospital but being investigated by a neuro at Heartlands.

Hey sonic…thanks for that…I am at the city hospital at present re eye neuro and had my MRi there yesterday. also…just waiting on an appt for results of this…but I think I will push for referal to neuro consultant as they can reveiew me as a whole re dx etc…Cant see anything for good hope which is my nearest hospital…;_( I think because of my mobility and left leg probs…back pain /neck prrobs, vertigo, bladder probs…and spasms def needs looking into even though I have had theses for a long time…as much as I am hoping its not MS…it would explain allot for me both past and present…and really I just would like some answers and a dx…and access to appropriate treatments and drugs…support etc…

I’m in limbo and awaiting a final diagnosis, I have optic disc pallor , Marcus Gunn pupil, slightly positive Rhombergs sign, numbness, tingling , loss of balance, brisk upper limb reflexes, weakness right side, pain in my ribs . I have trouble sometimes with my bladder as if I cannot finish and have to sit for a minute or two, I cannot do heel toe and I veer when I walk. First Neuro at Moorfields a year ago said probably not ms , next 2 at the national think MRI 50/50 but I did have a clear LP. And VEP I’m waiting for another MRI to be done this Wednesday 24th February on brain and spine then back to dr Tripp on 10th March. Will they have to find one more lesion for McDonald criteria I’m so worn down with pain and worry I just want some help. Thank you to all of you that post in limbo it’s terrible isn’t is.