It’s really frustrating and if you’re waiting for MRI results, there’s probably not much you can do at this stage other than to try to occupy your mind with things that will demand your full attention.
One thing: if you google “MS trust” and “limbo land”, they have a video for people waiting for results, including some discussion with a neurologist.
This issue - the terrible impact of waiting months - years - to get to diagnosis - is not discussed very often. Perhaps we should be contacting MPs about it. This issue is never mentioned in discussions on the state of the NHS. You want to know at least where you are in the system and you feel shut out.
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I had my first appointment with a neurologist on June 14th at Salford Royal Hospital, she arranged an MRI which I then had at the beginning of the 2nd week of July.
I then received a telephone call on the 24th with the suspected diagnosis. This was followed in the post by a copy of the letter sent to my GP ( I asked for copies of all letters when I checked in at the hospital outpatients reception )
All pretty quick, I suspect I was ( Tongue in cheek ) lucky.
In one way it was scary for it all to happen so quickly but there is no nice way for these things to happen I guess.
Following all this I have now been appointed to my new designated neurologist who I had an appointment with early on the 1st week of Sept where he went through my scan results with me and performed various other assessment tests along with some additional blood tests. He has since made another appointment with me for 2025 ( 12 months time. )
I have now this week received an appointment for my Lumbar Puncture next month which I am not looking forward to.
Following on from there I have no idea what to expect.
The neurologist mentioned Kesimpta as a DMT but not definite or when it would likely be. I think he has to have the Lumbar results first and also a meeting with other consultants before he can proceed with anything.
This was and is just a record of my timescale and what has happened. Hopefully it might give you some indication of what is likely to happen with yourself.
I wish you the best of luck.
I would say try not to stress but I’m not a good example of that to be honest and I think anyone who says they did or do not stress would be fibbing. It is not a nice thing to have to go through and more than likely something you would never have imagined happening.
There are a lot of extremely helpful people on this forum who I owe an awful lot to for advice given both on here and also emails.
My advice would be is that if you’re uncertain of anything no matter how silly it may seem then use the forum and get answers and some peace of mind.
Best regards
Dave
Hi Dave
Firstly, I’m sorry about your diagnosis.
It’s interesting (and infuriating) hearing about the experiences of others in different parts of the country - your entire process from meeting with a neurologist has happened in only slightly longer than my wait on MRI results!
This forum is useful in keeping things in perspective and has people that definitely understand how hard the waiting game is!
Hi, I’m in a similar situation as you. I had my brain MRI with contrast 4 weeks from Tomorrow. I asked how long I had to wait for results and was told 2 weeks to 4 weeks the most. I have been very poorly and have been chasing my gp for results. I finally contacted the hospital that did my scan and was told they are running at 4-6 weeks. Time has been dragging. I just want some sort of explanation of why I feel this way. This has been going on for years. I hope you manage to get your results soon. Best of luck.
Unfortunately I’ve been waiting over 3 months for results since my last MRI.
I’m also under Salford Royal.
I got in touch with my neurologist secretary and she said the radiologist report was there and she would pass it on to him.
This is my baseline scan having started a DMT last year.
I just want to know if there is any further damage.
Sadly it can be a worrying and frustrating process.
When I originally went to see my GP he wouldn’t agree to send me for a MRI and thought I was depressed and anxious.
I was because I wasn’t been listened to and struggled to do my job but knew something was wrong with my brain.
I suspected MS or a brain tumour or even early onset dementia.
My younger sister also has MS.
I had to arrange an MRI privately.
My first MRI 3 years ago found multiple lesions in my brain and a couple in my c spine with demylination.
Unfortunately my LP was not conclusive.
My neurologist diagnosed "probable MS " and gave me access to a MS nurse straight away as he was convinced it was MS but I didn’t meet the Mcdonald criteria at that time.
He also thought at my age it was unlikely that any new lesions would be found and that all my lesions were old.
My annual MRI last year found a new lesion and I was formally diagnosed.
We know our own bodies and if something is wrong never give up advocating for yourselves.
I have a telephone consultation in October with my neurologist and hope I’ve had my report by then.
I had my fourth MRI in August.
My first one I think I saw the neurologist maybe 2-3 months after and got the results then (normal), my second was done privately so was a couple of weeks and then full access to images and results. Third one I think was July 2023, I didn’t see the neuro again for a year due to getting lost in the system and having to chase a follow up, I got my MRI results back around November via a freedom of information request for my records but had I not done that it would have been a year later when I saw her.
This time it’s been about 7-8 weeks, I emailed the neuro secretary and she just said the scan is on the neurologists desk. But my GP and I never seem to get a copy, it’s only when I next see the neuro (which she said would be 6mths) she’ll tell me in person and my GP will then get a letter saying they saw me, symptoms are continuing, an MRI done in xx month/year was clear and the plan is…
I assume if they ever actually found anything it would be flagged by someone at some point before it reached the neurologist and I’d get the results sooner, and next appt would be brought forward but I don’t actually know. In all honesty I think every MRI I ever have will come back clear and I’ll die with no diagnosis of anything, so I don’t get too excited by my results personally, but I just assume that anything major would shake the process up a bit and I’d hear sooner. On the walls of the waiting room it just said the referring clinician would have the results in about a week, I spose after that just depends on the efficiency of your clinician.
I had my MRI and review appointment very quickly between each other. Whether that was to happen I don’t know. At the same time I had an ongoing problem with hypertension so I was visiting my GP nearly every week. (Taking my blood pressure at home to compare with GP readings) Myself and my family have known this GP for quite sometime so it was always Informal. One particular day (she) asked me did anyone come with me to see her and I said no why? Very strange behaviour so I asked again why? Clear as I day I can remember the medical student sitting asking me about my wedding day. It was as if something was wrong with the atmosphere and looks. Then the GP said my brain scan showed abnormal activity and findings indicating MS. I couldn’t drive home with shock so my father took me home again. The rest of the day consisted of staring into space.
Within two days neurologist phoned me asking me about symptoms etc. brain scan done again and that confirmed the findings. My diagnosis with my neurologist in person was confirmed two weeks later. It may seem very quick but it felt the longest time of my life. 
I have had a frustrating time recently trying to make headway with another medical specialism, and this has reminded me of the importance not to take this stuff personally. I find it dangerously tempting to feel that a malign system actively doesn’t care about me – me personally. That is wrong, of course and also unhelpful: it’s bad for morale. In practice, it’s much more likely that there are a lot of good people trying to do their best in a creaking system and it just doesn’t work very well. but they do usually get there in the end.
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Had my MRI in June and didn’t get the results until end of august. They came back normal, which makes me wonder why it is that I have. Still waiting for a neurologist appointment.