Really really confused now

So here’s my situation

August 2017 change of sensation in left foot and lower leg resulted in lumbar MRI. T12 cord abnormality identified and full brain and spine MRI arranged for 3 weeks later.

2nd MRI showed no further lesions and original had “resolved”. Lumbar puncture was positive for O bands with white blood cell count of 10 (92% lymphocytes), blood positive for ANA 1:160 homogeneous.

3rd MRI 9 months later has identified a small lesion in the cervical spine however still no lesions on the brain.

I’ve to go and see an MS specialist neuro but i’ve been told it might still be something else. Apparently my lesions aren’t typical of Neuromyelitis optica although they’ll do a blood test to be sure. i’ve only had one clinical eposide.

whats your best ‘real life’ guess folks ?


I’m afraid I have no idea what all that jargon means. When I got my neurological report I asked the neurologist what it meant in English.

It looks like there’s still some way to go with your diagnosis. I sympathise that you’re spending so long in limbo. It’s a very uncomfortable place, but it’s slightly better than getting the wrong diagnosis.

How long will it be before you get to see the MS specialist?



not sure how long, need to wait on the dreaded letters arriving

I asked my neuro at the very start and she assured me she was more than experienced in ms yet shes referring me onwards. cant help but wish she had done that earlier

Hi all . This is my first post …I’m 11 months into diagnosis …mri negative …ct thorax negative …I’m lost … been diagnosed with optic neuritis…trying to talk to nhs is impossible as they are as slippery as a politician… they make me scream…it will be nice to talk to people who understand

hi Older

have you got an ms nurse?

how are your eyes?

as far as i’m aware, optic neuritis is not permanent.

which nhs practitioners in particular make you scream?

make good use of your gp.

sorry that i have more questions than answers.

most of us old hands always try to respond to newbies.

so if you give us more info that will be easier for us to do.

carole x

Hi catwoman and thanks for the welcome. Here is my story so far I went to specsavers to have my eyes tested as they were in and out of focus and blood clots were found behind my eyes. R.v.i hospital in Newcastle was the next step with lots of tests including bloods…I happened to mention that I lost my sight in right eye and felt dizzy when when bending forward or moving my head from side to side quickly but i thought it was down to high blood pressure this was .11 months ago Bloods .mri of head …ct scan of thorax. Have all come back negative …appart from higher colesterol tablets and follic acid tablets that is the only thing that has been changed with my medication . I’m already on gabbapenton and tramadol due to burning and pain in my feet for about a10 years I have no ms nurse and a GP appointment is up to 3 weeks . I go to hospital every 6 weeks for further tests and have done for 11 month’s …but my consultant deals with both eyes and neuro. At my last visit I took a list of things that were happening ie cramps .toilet problems .bedroom problems .exhaustion… having a chat and loosing the thread completely …pains in eyes and not in focus also sensitive to light …trouble was my consultant was called to a seminar and her juniors were only specialising in optics so there was no one to talk to …my next appointment is 11th of next month so here’s hoping someone is there to talk to I’ve been frustrated as no one will talk …


it will help if you have someone to accompany you.

write down the main points you want to make and ask this friend to prompt you if and when you dry up.

they can also make notes of what the consultant says.

if your consultant is not there at your next appointment make it clear that you really need a consultation and ask for another appointment.

carole x

Thanks for the advice …I have been with a friend at every appointment . We can talk afterwards and go over things I will never be able to repay their kindness .I think I have been patient enough and deserve an answer of some kind .


I am about to go to the RVI (next Friday) for an MRI

I’ve had a leg go numb with burning cold sensation in it. Visual problems 3 times whereby I can’t see through the ripples and labyrthitis (sp) last year which was so bad I thought I was having a stroke or something!

Had neuro appointment at RVI start of June and letter to GP says right eye differential pupillary defect and pale optic disc. (went for an eye test an opticians the week after and before I got this copy of GP letter, and they never even noticed the optic disc thing so I went in and asked to look at the pics of back of eye they took and this different optician said yes, they agreed the optic disc was slightly paler, but only if you were looking for it) Weakness in right leg and clonus in ankle and knee. Consistent with upper motor neuron syndrome.

This past month my right eye has been sore when I moved it but I thought it was pointless going to the doc about it!


I am going to the RVI too


you will be able to repay your friend for their kindness at some point, maybe in years to come.

the friend who helped me, sadly died 6 years ago.

just before the end she asked me to look after her husband.

she also had a dog (elsa) who she loved.

i call round every other week to take elsa some treats.

she is ecstatic to see me and shows that she loves me.

her husband is still missing her badly so i spend a couple of hours chatting.

it helps me to feel close to my darling friend.

so on that cheerful note, believe me you’ll be alright.

carole x

Hi carole …I’m sorry to hear of your friends demise but .time is the only commodity we can truly give to one another …she would have taken great comfort knowing that you would step up to make sure her loved ones were never going to be abandoned …bless

Hi Aliscot… Hope your appointment goes well… I’m not knocking the rvi at all . doing tests is brilliant . All within half an hour of appointment time …the only thing I am disappointed at is being left with no one to talk to …I suppose without a diagnosis they can’t point you in the right direction …it’s so frustrating…

Thank you oliver for the invite to join in with the community but I feel a bit of a fraud until my diagnosis …that is why I’m in this chat room ie pre diagnosis…I hope this makes sense and don’t mean to disrespect anyone…thanks

Hi all … Been to see eye doctor at r.v.i today and eventually they have forwarded my case to neurology … …I have been cleared of having a brain tumour or cancer today which shook me a bit as I was not warned that is what a couple of tests had been for…so big silver linings but a little disappointed as I’m still in limbo … .still

nobody here thinks you’re being disrespectful.

we’ve all been or are in the same boat.

stay strong.

Thanks carole … I suppose most people go through this void of not knowing it’s a couple of days ago and I’m feeling numb … It’s hard to keep positive …getting stressed about work and if they will keep my job open and now filling in forms for universal credit. Money is so tight I’ve read the story’s about uni credit and all the people loosing their homes but I’m so fatigued I can not fight at moment. Sorry for the negativity but that’s the way I’m feeling


get help from welfare rights, CAB or another service.

their advice and help is invaluable.

Thanks for the advice again . I’ve worked all my life and don’t know a thing