Hello,
In Feb 2021 I woke up blind in 1 eye with sever pain when moving the eye from side to side. I was referred to the opticians who conducted multiple tests over several hours before sending me to the eye casualty at the hospital. Following more tests there was sent home and a week later received a letter to go back for a check up. Second appointment confirmed I had ON in my right eye (still not recovered and could look directly at the sun and not even see it) and blood tests were taken and MRI referral made. Had MRI in July '21 and referred to neurologist. Heard nothing so thought no news is good news, however in Feb 22 received a letter from eye clinic for check up - asked if I’d seen the neurologist and had my MRI results which I had not (seen anyone of been given the results). Eye consultant informed me I had lesions on the brain and would refer me again to the neurologist. (Wow, long story - apologies). Went on holiday in March, came home to a letter from the neurology department at the Walton Centre for a phone appointment with the neurologist in April. On the call, was diagnosed with CIS possible MS but needed a further MRI scan. I have had appointments with the MS nurse, Urologists (have to have a bladder scan), Physio, Occupational Health but nobody has mentioned doing a lumber puncture - is this normal? Do they always do a lumbar puncture or does it depend.
Had my second MRI scan in May, MS nurse called early June to say there had been changes to the lesions in my brain, but I’d have to have another MRI scan as they hadn’t injected the dye on my first one, so now I am waiting for the results of the 3rd scan, having other appointments and trying to understand what’s going on. I have symptoms which include, numbness and tingling in lips and tongue, pain in left leg and foot, back ache, hand numbness, dead/numb left arm when I wake up, dizziness and vertigo, fatigue and constantly urinating. Apologies for the long post and than you
Hi @Paul2 , in answer to your question on LP, I haven’t had a lumbar puncture and my diagnosis Sept 21 was definitive. If you look on the NHS website about diagnosis it will tell you reasons why you may not need one.
I had an MRI with contrast (dye) then in for the results. You need to show 2 clearly different attacks on mri and have some form of physical abnormality - mine is sensory reduction in my right foot, EDSS1, now on meds and feel tip top 95% of the time. (The other 5% I feel like poop, but I can live with that)
I didn’t have a massive back catalogue of symptoms either but when I look back, things were far more frequent than I thought cos I was busy ignoring everything!
Sounds like you’ve had a bit of messing around, hopefully your 3rd scan will provide closure for you and you can get on the meds asap and learn how to live your new life.
All the best x
Hello, so 2 years since me last post and I’m still in limboland! Haven’t seen my neurologist since June '23 and only heard from my MS nurse once and that was back in April. I explained about my symptoms, vertigo, weakness in right leg and arm, difficulty with mobility, burning sensation in my legs, numbness and fatigue, I was advised to take 2 amytriptylin at night to help which hasn’t, might as well take a couple of boiled sweets!!
I really don’t know where to go from here - I’ve given up on contacting MS nurses and given up on all hope of hearing from the neurolagist again. I get more sense froim myu GP who referred me to the spine clinic to see if there was anything else that could be causing issues with my legs and I have now been referred by the specialist for an MRI.
I’ve just given up on the whole thing to be honest and will let the dice fall where they want, I’m tired, exasperated and angry about the MS service here in North Wales, apparently it’s meant to be great but talking to another MS warrior who has PPMS, he feels the same about the awful MS service we have to endure here.
Apologies, rant over! 
Hi Paul I’d suggest paying for your own brain and upper spine MRI (c.£700). expensive I know but might give clarity, and force NHS to then react.
Best wishes
Hi Paul if I was you I would contact your MS nurse and ask about a LP.
I find I get through to a recorded message leave a voicemail and get a call back between 2 and 5 days later.
Do not give up unfortunately the road to diagnosis can be a very frustrating and worrying one especially as you are not receiving any DMTs.
Also send your neuros secretary an email asking when your next MRI will be and also request an LP if your MS nurse hasn’t already done so.
My own journey to a formal diagnosis took 3 years.
Take care and keep advocating for yourself.
Hi Paul. I’m trying to understand where you are in the MS assessment- diagnosis process. Did you have a third scan - the one with contrast and were there any outcomes/ conclusions from that?
Thank you for taking the time to respond, I agree that that might be my next step to be honest
Thank you for taking the time to respond mi appreciate it. I called my MS nurse to ask about LP and MRI and was told they’d get back to me - that was 3 weeks ago so still waiting which I’m happy to do as these things take time. I’ve tried to get the email address for me consultant’s secretary but this again is proving to be an uphill battle, nobody will provide me with any details so it’s back to the GP to see if he can help.
Hello, thank for taking the time to respond, it’s much appreciated. The diagnosis I received states that I have CIS with early stages of MS (this from a letter from my consultant). So far I’ve had 4 MRI’s, 3 with contrast at the Walton Centre and have been told there are lesions on the brain but nothing else, apparently no changes. My MRI was a year ago but due for another scan soon after being referred for one by a specialist at the spine clinic as my right leg has very limited mobility and she wants to investigate further as a precaution and to see if it’s down to MS or something else.
I’m fed up of trying to get responses/answers from the Walton Centre, all I get told by them is that my symptoms are to transient, persist for too long to be MS or it doesn’t sound like MS - but I thought everyone with MS have different experiences so why am I being compared as opposed to being investigated!! I’ve requested to see a different consultant as the one I had originally dismissed everything I was saying, telling me it doesn’t matter how many lesions I have nor that they could hold my hand in dealing with this journey and I had to figure it out myself!!!
I’m fed up and wish I could see a neurologist from another part of the country as the Walton Centre have been useless - I was informed of my diagnosis by the specialist in the eye clinic at my local hospital as the Walton Centre hadn’t contacted me in 14 months after my initial referral following OP,
OK , so your consultant (Neurologist?) says you have early stage MS. Is that not a diagnosis of MS and if so, do you know why he/ she is not starting you on a DMT? Have you asked him/her?
Yes I understand it’s an MS diagnosis but don’t understand why I’m being left to my own devices without support/follow ups and my consultant (the neurologist) hasn’t mentioned DMT’s at all and when I ask he say it’s not important right now
Have a look at the NICE (National Institute for Health and Care Excellence) guidelines on MS. There is a downloadable section on MS - its diagnosis and everything including how patients should be fully informed and involved. Have a look and if you think the Guidelines are not being followed then ask why and point out that the consensus is that it’s best to treat MS early and hard