I had an NHS scan 3 weeks ago and I’m awaiting results. This was my first MRI so it’s likely to be a no indication of MS/possible indication of MS rather than anything definitive, but it’s been on my mind constantly. I’ve called neurology and they just say I’ll hear from them in due course but won’t say when/how.
I know it won’t make my wait any quicker, but how long did it take for your results and how did you get them? I suspect hearing a range of experiences will put things into perspective for me.
This wait (and the huge waits to be taken seriously by a GP, get a neuro appointment and then an MRI) has really taken it out of me mentally and I’m just so ready to know whether it is likely to be MS/is something else from the MRI or if I will be restarting the diagnosis process in a different direction.
I had access to the radiologists report through my patient portal about 5 weeks after the mri but im still waiting for my neurology appointment to discuss it.
Its hard to be patient when you just want answers.
Hearing about others getting untimely results makes me feel at least a little bit less frustrated/entitled as others are also waiting and it puts it into perspective.
By patient portal do you mean the standard NHS app or is this something different? I’ve wondered if I should be checking this or not.
JBSS my last MRI was 6 weeks ago and I’m still waiting for results.
Ive got a phone appointment with my Neuro in October so it’s possible I won’t hear anything until then.
Unfortunately things rarely happen quickly including diagnosis.
My own journey took over 3 years to formal diagnosis and starting a DMT.
I do understand how frustrating and worrying the wait can be but its in your best interests to try to remain calm as stress is one of the worst things for MS if indeed you do have it.
Thanks claret57, the perspective really does help.
I’ve always been impatient, but it is very tough waiting for possible MS (from symptoms only) to be investigated as I’ve now been struggling for two years and on hold waiting for MS investigation for about a year with no other tests etc. If it’s not likely to be MS from the MRI, I’ll be back to square one on the diagnosis ladder and I’d want that wait to start ASAP too.
It really is frustrating how long each step takes and dealing with uncertainty for so long is draining.
Hi Jbs, I think waits to hear about MRI scans are pretty normal. I remember waiting for some weeks and sending rather stroppy messages to the hospital when I was diagnosed some 18 years ago, and these days there is always a wait to hear the findings of my annual scan. It’s not good but seems to be he norm
I think I’ve had the more typical route (neuro), and don’t have any other apps/an MS nurse so really my only point of contact would be neuro reception who have told me what they can.
I’m keeping my fingers crossed I hear soon, and keep checking the doormat whenever I get home, but it does seem like I may be waiting a fair bit longer.
Yeah it all seems to take a long time. I had an MRI at the end of April for something ear related ( which was fine) but they found suspected MS with various brain lesions and one on my cervical spine. I found out on the 3rd of July by letter, I had been CC’ed in a letter to neurology asking for them to see me. It was all a big shock, I happened to have a GP appointment a few days later and asked for a referral to a different hospital as they are very well regarded in this area, it was a bit of a fight to get a referral but I managed to get a appointment at the start of October. I had a follow up telephone appointment with ENT(mri was with them) at the original hospital a few days ago and they sent a letter to chase up neurology and referred me to a balance clinic at another hospital. I heard about that the next day and have an appointment in November but nothing from neurology yet. I’m very glad I got the referral through my GP as I think this other hospital things are super slow.
I understand how it feels to be in limbo with this, I am just trying to be healthy and not stress but it’s not easy. I had just got a new job which I really needed but had to pull out medically as you can’t do that job with some neurological going on. Gutted about what they found and gutted about the job.
I hope you hear from them soon but it might be worthwhile getting your GP involved. Take care.
Had my MRI then had to attend out of hours as I couldn’t walk because of pain, doctor asked if I wouldn’t mind him looking at my MRI results as I was due to attend the next day at neurology. No problem I said, and he told that it was MS. It wasn’t a surprise as neurologist had already said in his opinion it was MS…so all in about 3 weeks
I too am being investigated for MS currently. I was told when i had my MRI that at the moment with how the NHS is it will take 6 weeks for results to come through (I’m assuming a nuero apt will then be booked in once the report is ready?) . I’m at week 5 now and still haven’t heard anything, rang the CT dept at the hospital and they confirmed no report was available yet.
Oh wow, 6 weeks sounds absolutely crazy especially if that’s only for the report to get to neuro rather than actually get a result. If you don’t mind me asking, which trust is this?
I’m honestly so frustrated with the amount of waiting for appointments and results. I’ve been having symptoms two years and I’ve still not even got an idea about whether it could likely be MS or no signs on an MRI.
I’m really struggling being so close to potential answers but knowing it could still be weeks or months until I hear anything.
Thank you everyone for your experiences and I’m sorry you all also had to wait.
I’ve just recently come out of hospital after a 9 day stay, leading to being diagnosed with MS. I had 3 MRI’s one on the brain and 2 on the spine and I got all results later that day.
It’s the Manchester trust. So could be different where you are. By the sounds of it I’ll get the MRI report via my hospital app and then need to see a neuro after that. I’m terrified of not meeting the diagnostic criteria for MS because I feel rubbish on the daily and would just like a diagnosis.
Hope you hear something soon and get the answers you need
We sound like we’re in a similar position with being so tired of feeling awful. I’m as emotionally ready as I will ever be if I do get the news it is suspected to be MS and oddly find the uncertainty more unsettling than the actual result. I felt the same way when I was waiting for my neuro appointments to come through, felt better after I had an appointment date, then stressed and on edge waiting for the next appointment date to be confirmed, better in the month long wait for the appointment and then similar with the MRI appointment - stressed until I had a date, fine in the month wait from getting the appointment to the appointment date, and immediately stressing afterwards that the answer is there and I don’t know when I’ll get it.
I’m in Newcastle so a different trust, but if it’s anything like my neuro appointments I might be able to see the letter neuro write to my GP on the NHS app. I’ve got a slight hope that they’ll be copied in to a radiology report being sent to neuro, but I suspect not as I think results only go to the requester of the MRI (neuro for me).
I’ve settled on checking the app once a day (maximum) but finding it hard to stop getting my hopes up every time I receive post.
So I’ve managed to get my report by speaking to my GP. I’m now being referred urgently to nuero. My advice would be to see if you can get in touch with your GP
I had MRIs done at Salford in 2022-23. I was told at the appointment it would take 8 weeks for the neuroradiologist to report. That report would then go to my neurologist. Then there is another wait for him to review it, for them to decide what to do, contact me…
When results were available, they then took weeks to type a letter, which then took 2 weeks to reach me in the post.
I did a freedom of information request at one point, in desperation. That takes a month and the information I got was incomplete.
On another occasion, I tried to ask them to email me the results. They won’t do that. In the end I asked them to email my GP surgery (NHS email) - and they finally relented.
We all go through these things individually… perhaps if we got together we could make a case for change.
I’m now at a bit over 10 weeks, and not a peep from anyone and the office staff are very non-commital when I’ve asked when and how I might expect to hear.
I’m just so frustrated not to know what is going on and feeling like it is all out of my control.