Diagnosis & when to contact

New diagnosis and before diagnosis
1

Hi,

I am hoping for a bit of guidance on next steps and perhaps whether I just need to sit on my hands a bit longer or reach out.

Background: march 2023 I had an MRI showing a hyperintense longitudinally extensive lesion in the cervico-medullary junction (?) At least I had two years to learn what that was…I had a repeat scan in Dec 2023 showing no changes and blood tests for Aquaporin4 to rule out NMO, I had my first appointment with the neurologist in Nov 2024, ordering a repeat MRI and bloods, both bloods were negative. The MRI in Dec 2025 showed futher lesions along my cervical spine and I was reffered to an MS specialist for an urgent appointment at another hospital. On reviewing my scans (end of feb), she noticed lesions that hadn’t been reported futher down my spine from 2023 and very small brain lesions that were not reported because they were not significant enough. She told me that based on my symptoms, history and neuro-exam and the outcome of my MRI that “This is MS” she could confirm dissemination in time due to a scan I’d had on my spine when I was 18 that didnt have lesions (12 years prior). She wasn’t able to confirm dissemination in space and needed to go over this with a colleague and that I need another brain MRI (as my hospital only did repeated scans on my cervical spine) and that I would be reffered to neurophysio and recieve a follow up call to go over my timeline of events that could have been new symptom flare-ups.

It has been 3/4 weeks since the appointment and I haven’t got anything to show for it, there is no record on my nhs app or drs notes regarding the appointment outcome, is this normal? I understand that as she wasn’t able to diagnose me during the appointment it wouldn’t come back as a diagnosis but I’m not sure if I should have a bit of information about it and what the next steps are in writing and for my GP.

Is it too early to contact them and ask what is happening?

How do you manage this waiting time without losing the plot and turning to Dr google for evey slight change?

She had said that even if this isnt MS due to all the lesions and locations on your spine, heat will impact your symptoms making them worse.

So from This is MS to even if this isn’t MS has left me a little bit confused and worried and pretty alone because I don’t want to always talk about it with friends/family/partner but its weighing heavily on my mind and as much as its only been about 4 weeks, in many ways it has been 2 years since finding the initial lesion and all the years before that where I was misdiagnosed with mental illnesses and told it was all in my head and I was just a bit emotional and stressed.

I apologise for such a long explanation, basically I guess I’d love to know your feedback on when I should chase things up if I haven’t heard anything in X amount of time and hear from people about it who understand the confusion and limbo of it all.

Thank you :blush:
T

2

Hi there. I live in Scotland where we are yet to get an NHS App but from what I know, most of the info on the App is GP surgery stuff and hospital appointments and investigations might not appear.

I recognise that horrible period of waiting for a formal diagnosis- MS Folk often refer to it a being in ‘Limbo Land’. If it was me I would make a phone call.

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Hi tabby tabs, it sounds like as your case will be discussed with colleagues, it most likely could be in the next MDT meeting at your hospital. It takes a while for letters to be sent after you have seen a consultant and then for a while for your GP to read them then add to your records on the NHS app. Hopefully you will also be sent a copy, I know in my own case letters have taken between 2 weeks to up to 8 weeks in the past to appear.

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4

It’s very frustrating and unfortunately this kind of limbo is very common during the diagnosis “process”. You could try contacting your consultant’s secretary - sometimes they are hard to get hold of, though.
NHS trusts vary a lot in how quick they are, but I’ve had waits of 8-10 weeks just while a letter is being typed.
Brain MRIs also take time - a couple of months perhaps to the MRI appointment, then weeks for the report to be produced by a neuroradiologist, sent to your neurologist and for them to assess…
There is a video on “limbo” land on the MS Trust website, with a neurologist talking about the process a bit. Otherwise, what can you do to help yourself while you wait? Perhaps focus on the usual lifestyle stuff i.e. exercise (really important if you can manage it), healthy diet, plenty of vitamin D… I think getting outdoors for exercise - leave phone at home - can be one way to get away from too much Google.

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