I’ve been a longtime lurker but finally felt brave enough to make an account. I’ve been under the care of a private neurologist since mid April 2025 after developing sudden onset diplopia and problems speaking/swallowing around June 2024 (and the neuro-ophthalmologist at the NHS dismissing my symptoms without any investigation at the time).
This week I had a follow up appointment to review my brain MRI (with and without contrast) with not so great news; there are two lesion areas on the scan - one in the front right cortex and another on the right side of the medulla.
During the appointment the neurologist suggested it was ‘probable MS’ and I’d be best placed to transfer my care back to the NHS and join the wait list see an MS specialist that they recommended who will be able to help further; this was a left field suggestion as I hadn’t even considered it could have been MS causing my symptoms (I’d thought it was a cranial nerve issue/mini stroke or something to that effect).
I’ve hunkered down to prepare for the long wait to be seen, however I just wondered how you all found your diagnosis journey? Did your neurologists have enough evidence from symptoms to make a clear cut diagnosis straight away after MRIs or did you have to go through further investigations? I’ve had a host of other symptoms like loss of bladder sensation, buzzing in my feet and shooting pains through my shoulder/neck which have previously been put down to a slipped disc but the neurologist said I’ve to note them all down for the next appt just incase.
I’m just feeling abit lost at the moment, and I’m worried for the future. Thanks all for your time, sometimes it’s good to just talk it through.
Hello, well done on reaching out it must be a worrying time for you. I think everyone’s journey is different in regard to diagnosis. I got mine a long time ago when I was 20ish now 50+), I am not sure at that point people know so much and diagnosis was really a bit of guess work. These days things are better and I am looked after by a team of people in the NHS. Usually a check in appointment as I have been lucky really. As progression hasn’t been so fast, like you I have seen a few private consultants but the nhs is able to provide a good wrap around care, it will take time unless you are lucky as there is limited resource. Maybe able to see the private consultant while you wait in case of any questions.
Bladder issues, buzzing feet etc sound very familiar along with a few other items. I hope you’re on the list and can get seen soon.
I don’t know, but for what it’s worth what happened with me was: the GP (who probably had a shrewd idea what the problem was) referred me privately to the local MS specialist. He did a history and clinical exam, followed up (I now realise) to confirm that what he suspected to be relapses resolved themselves. He advised no MRI unless and until something else came up. Which it duly did, and then I had an MRI privately and that plus clinical history was enough for a probable MS dx, confirmed by a lumbar puncture that was done after he transferred me to his NHS list.
Your story so far has been a bit different so I do not know what the NHS neurologist will want to do. but the sooner you’re in the system, the better.
Hi there, I am new on here too and recently diagnosed. I found the MS Society website and Insta pages super helpful during my 12 week waiting period from initial neurologist to MS specialist neurologist. I had numerous MRI and LP. There is lots of information available about the diagnostic criteria and approach taken to diagnose. I used this to form 4 or 5 questions I really wanted answering by the MS team in my first appointment. My NHS experience has been brilliant under the MS team. Im early in my journey and late onset so coming to terms slowly and learning lots. Good luck.
Thankyou for sharing your story; I think I’ll end up with a lumbar puncture too as it was mentioned as another way to confirm what is being suspected by the private neuro.
That’s really good you could be transferred onto their list - I was given a retired NHS consultant so I need to rely on one of his colleagues taking me on - fingers crossed!
Thankyou for replying! I’m happy to wait for the NHS to have a chance to see me as like you say they’ve got significantly better access to multi team care - my only worry is that something else happens before I’m seen but I’ve been trying to remind myself I can go to my gp if need be and that I’m not all alone with this.
I hope you’ve been able to keep well on your journey too!
You are welcome. My RRMS was very active from the start (25 years ago) and the only DMDs available then were better than nothing but not really up to the task. I had a few torrid years and acquired quite a lot of permanent damage before starting one of the newer highly effective DMDs 15 or so years ago. It has kept my MS quiet ever since so far, fingers crossed. There isn’t ever a good time to be diagnosed with MS, but now is better than 2000!
Wow that’s really reassuring to hear; I’m sorry it took so long for medicine to catch up though!
I’m only 33; which I’ve since come to learn is in the common diagnosis age bracket for women; and I’ve still got a lot of life left ahead of me and if I end up with a confirmed diagnosis then I’m not letting it beat me
Ah I hadn’t thought about the instagram page - I’ve just followed it now thankyou!!
It’s so reassuring to hear that you’re having good care with the team; how have you been adjusting to life with the diagnosis? I think I’ll be on these forum pages a lot in the coming weeks/months!
Hi @allywebbo - glad you’ve reached out and so sorry that you’re going through this at the moment. Seems like you’re being pointed in the right direction but frustrating to have to play any kind of waiting game when it comes to your health!
All-in-all, my diagnosis journey for possible MS has been about 5/6 months so far. I had a very unexpectedly speedy journey initially - got a spine MRI on the same day as my second trip to A&E this February after leg/middle body numbness. Think it was same-day since doctors wanted to rule out some other conditions which would need immediate treatment. Neurologists then had enough evidence from some lesions in my spine to order a brain MRI booked in a month later, and after more lesions were spotted, a lumbar puncture was next on the cards about another month after that to continue investigations for MS. I’m waiting for my results now. I will have my final appt to discuss results with a neurologist in early July.
Your symptoms all sound so deeply unfun and sorry you’ve been referred this way and that way. Frustrating that when scary things happen with your health that sometimes there are no immediate answers and lots of long waiting periods. As someone who likes to deal with things head-on, I definitely find that stressful sometimes! Hang in there and remember to go gently with yourself - perfectly normally to feel very lost and confused at the moment, so take extra care and sending strength your way.
Sorry to hear about your results. It must have been such a shock for you. Good to be with a NHS specialist though to support you. I hope you have good support network around you too. It can be overwhelming so it’s good to have this community.
For my journey, I had an isolated incident 20 years ago which I didn’t even consider could be MS. Then since April last year I’ve had four relapses. I originally went to a private neurologist but after my MRI revealed spinal lesions, I transferred to NHS. I’m one of the few who don’t have brain lesions but they made the diagnosis from MRI results, symptoms and negative antibody tests.
Wow that must have come as a shock to yourself too after 20 years of not having any relapses - I hope you’re managing to keep well!
I’m starting to come to terms with what the future might hold abit more now; but I’m still pretty shell shocked. This is such a fab community of people which is definitely helping
Hi Sorry I didn’t reply, crazy busy at work and life. I’m doing ok, not great as the heat has been so impactful on my wellness. I just had my first loading dose of my DMT on Thursday so I’m on the road to hopefully slowing MS down and mitigating progression. How are you coping? Any update on diagnosis yet? It can be so scary but in the end none of us can have any control of getting this disease and it was on my mind 24/7 at first. I now am trying to ensure it doesn’t define me and embrace a new future. Wishing you the best.
Hey, no worries at all How are you finding the DMD?
I had my NHS specialist appt today, they reviewed the scans and info from the private neurologist plus asked me a lot about symptoms etc and then said they’re confident it’s MS but to make the formal diagnosis I’ll need another MRI inc spine this time and maybe a lumbar puncture.
I’ve been told to go and do some research into MS and treatments - specifically Ocrevus and Kesimpta - so that I can come back to the next appt armed with info and loads of questions… I feel like I’m in safe hands now
It’ll be a tough few weeks/months of waiting for appts and results but it feels good to be finally making progress!
Just dropping in to update for anyone who has been following along so far;
I’ve had my consultant letter through and I’ve been diagnose with Clinically Isolated Syndrome for now - pending next MRI results.
I’ve got that MRI Head and Spine with & without contrast booked for tomorrow (within 2 weeks of last neuro appt); and the consultant will be in touch afterwards to discuss findings/if a lumbar puncture is needed once the results are ready.
I’ve also had an appointment booked with the local MS Nurse for next week too.
Looks like things are moving forward with some momentum
I’ve not stopped to process this all yet, I’m waiting until I see the diagnosis in black and white first… so I’m sure there’s a bow wave of emotions coming my way shortly!
Hi @allywebbo, glad to hear that everything is still being investigated and hope the brain scans all went okay. Also hope the appointment with the MS nurse was helpful!
Thought I’d come on and update where I’ve got to so far…
The MRI wasn’t ordered properly so there was no spinal imaging or contrast used and it then took seven weeks for the results to be compared with the private scan I’d had done in April. No new or active lesions on the brain MRI so no MS diagnosis could be made.
I got a call end of Oct to book in a lumbar puncture which I had yesterday evening and I’m now laid up trying to rest and stop the headache/backache getting worse. My consultant said the LP results will take a long time to come through so I’m not expecting to hear anything before xmas
I also saw the MS nurse again yesterday who started to temper my expectations that because of the new McDonald Criteria and the fact there weren’t any new/active lesions on the scan that I might not be eligible for treatment even if the LP comes back positive - which is a real kick in the teeth!
It’s going to be a long wait for results, but in the meantime I just need to keep my head down and focus on spending time with my family instead of worrying as that’s not going to change the outcome!
Hope you’re all doing well wherever you are in your journey. x
I’ve read all the other messages in this thread and you’re quite right in what you say about time with your family. Worrying about anything that might or might not be isn’t going to change the outcome one way or the other. Much better on your resources to concentrate on your family and better on your health and mental wellbeing than worrying on something you have no control over. Wishing you all the best and hopefully you will receive news one way or another soon enough and then you’ll have some ideas how to prepare and proceed going forward.
I just wanted to say hello. I hope you get some more clarity soon.
My journey was similar to yours in that I was diagnosed with clinically isolated syndrome first, then RRMS more recently.
Initially in my neurology appointments, both private and NHS, my ‘list of possible symptoms’ (created in January when I first saw an MS neurologist) didn’t make the neurologists think that I had had clinical episodes / relapses. But then I went through the list again more recently (September) and noticed that a few symptoms had stopped / started, so added that info, plus I tried to organise the list of possible symptoms into sections eg legs / balance / bladder etc. And I tried to add timescales and dates as far as I could, and as specifically as I could (which was a bit vague for a lot of it). That seemed to give them enough evidence that I HAD had relapses.
So it might be worth doing something similar before you next see the neurologist, if you can.
I have been very lucky in that one of my friends is an MS specialist neurologist is another area of the country and she has guided me through this process.
Because my last MRI showed that I had an active lesion in my spine, plus the neurologist could see that I had had relapses of clinical symptoms, that meant i was eligible for a highly effective drug. I am waiting for that to start now.
I wish you luck and clarity for your future appointments. Keep us posted
