MRI results on the NHS - How long to wait?

New diagnosis and before diagnosis
1

Hello everyone,

Been away for a while. I finally had a neuro appointment on the 31st of July and an MRI on the 6th of September (11 days ago).

I was wondering how long people had to wait before they were given results? I was initially told 7 days, then 10 days and when I called yesterday I was told it could take a month.

My work up is more to rule things out because my GP and Neurologist are confused and don’t know what’s going on. MS is still a possibility. Whatever is going on, Baclofen really helps.

I’m a bit upset today though because at the GP yesterday I saw a new Doctor (sadly my previous one has completed his training and is gone). So, the new guy, although nice, reckons I actually have physical symptoms and real pain as a result of psychiatric issues, namely Somatic disorder/somatization.

I’m totally mind blown and actually hoping that something shows up on the MRI. How bad is that?

Anyway. If anyone could help me with timescales I would be much obliged. I’d also appreciate hearing from people who have had somatization mentioned to them.

xxx

2

I had my MRI last week and I was told it would be about a fortnight. I think it varies in different areas though. I never believe the timescales they give though! Hope you get them soon.

Sharon x

3

Thank you! I was already nervous but I’m worse now. Especially after being told it could all be psychiatric :frowning:

4

My gp kept saying alot of my symptoms were anxiety and i practically begged for a brain ct scan and he phoned me 2 days later to say i needed an mri because there were 3 shadows on it. I had an mri and saw a neurologist 3 weeks after for results which revealed 5 lesions. I think they put too much down to anxiety and that it’s all in our head, we aren’t stupid and know when something isn’t right.

Good luck with results xx

5

Hi,

I’m new here, and to the idea of MS… I had an MRI a few weeks ago now - they first told me 7-10 days but the results aren’t back in yet. Luckily I seem to have found a really good GP (at last! First one!) who is chasing it…

And by the way, when he said they were testing me for MS, also a few weeks ago, he emphasised that it would probably be months before I’d get a diagnosis, and apologised in advance for the wait, which has actually made me chill out a bit about it.

So sorry about your somatization bombshell - I know that would really knock me at the moment and hope you’re ok. And I think it’s dead natural that you’d partly want something to show up on a scan, as you’re getting real symptoms. I’m a bit like that myself - if they say there’s nothing then where does that leave me? Though it feels wrong to say it… It’s all very confusing,

Take care,

xx

6

Thank you so much Blue Sky. Yesterday he was talking about things like tumours etc and that I would have found out already. Scary stuff.

I’m just not ready to consider a purely psychiatric cause. I looked up Somatic disorders and it doesn’t fit. The previous psychiatric diagnostic manual (the DSM-IV) had set criteria for it which includes 4 areas of pain, 2 gastrointestinal symptoms, 1 sexual symptom and 1 psychoneuro symptom. I knew straight away that I didn’t fit.

There is a new manual out now though. The DSM-V. The criteria is new and different and I found it quite vague. Technically everyone with ME/CFS or chronic pain could be told that it’s all psychiatric.

I also don’t understand how it could all be down to stress and anxiety when I don’t recognise that in myself. I’ve asked friends and family and they agree. I’m a final year student at vet school. My course is stressful but my levels are appropriate. I just don’t get it.

Step 1: Wait for MRI results

Step 2: If MRI is normal I would like to see a rheumatologist to check for physical causes including fibromyalgia

Step 3: When all physical causes have been ruled out I will consider psychiatric ones. I don’t want to be sent to a psychiatrist now and be told that I’m stressed when I’m not.

Why does it have to be so difficult?

7

Is anyone else able to share how long it took from having their MRI to finding out the results?

8

I had my MRI on 24 May and had a letter with an appointment to see the referring consultant about 3 weeks after the scan, so I suppose this is about average from what other people have said.

I was also told by the consultant and by my GP that if they found anything really serious (ie tumour) I would hear straight away.

9

Hi Elephant Eyes -

this all sounds really stressful x

I wanted to comment on your post for a few reasons, but mainly because I really relate to it.

I have recently had MRI done, It took about 4 weeks for my results to come through, but I was told to expect this wait at the time of my appoinment . As I understand it, each area has different waiting times for MRI results, and unfortunately there isn’t too much you can do to hurry the process along - but once the MRI has been viewed by a neurologist, there are things you can do (eg phone the neurology dpt/your GP/ PALS) in order to get access to the information.

It is upsetting when you feel that the possibility of a physical condition isn’t being looked into properly because your doctors have attributed your symptoms to stress/anxiety. I understand that frustration completely! However, having an MRI does show that your doctors are checking out other possibilitues too, so just hang in there a few more weeks for the results x

I also understand your worry / frustration about suggestions of psychiatric diagnoses. As I understand it, this does seem to be a common thing that happens to people who are being assessed for MS. Try not to worry about the changes to DSM categories about somaticisation disorder (which do appear alarmingly broad!) The DSM is not used in the UK - UK clinicians use a different diagnostic manual - so changes to DSM criteria do not affect you. Another thing to bare in mind is that - in the same way that a neurologist does not ‘easily’ give out a diagnosis of MS, a psychiatrist does not jump to the diagnosis of somatic disorder (even if your GP refered you for evaluation, a psychiatrist would not easily jump to this diagnosis). My psychiatrist ( I have OCD - a completely separate ‘issue’ to my MS symptoms) stated that most psychiatrists are cautious in this area . So I would definitely try (although it is hard) too view psychiatric causes as something that need to be ‘ruled out’ - much in the same way that vitamin defficiencies / diabetes etc need to be ‘ruled out’ - and try ( although it is hard and not something I am good at) not to get too frustrated when they say it is something they need to screen for. One thing I have found during such discussions is that it is very useful to (a) acnowledge / talk about anxiety and then (b) explain to the doctor how your current symptoms differ from any past experiences of anxiety. Eg,say “I know that when I get anxious I sometimes feel hot / shaky” etc etc (use as much detail as pos), but the symptoms I have now (eg stiffness / pain etc) are different and so it is likely they are not caused by anxiety. Not sure if this will be helpful to you or not.

Best wishes with everything - hang in there x

10

Hi I had my 2nd MRI in August 2013 still waiting for mine. Got my appointment with neurologist in Oct mŷ way of thinking hopefully everything must be ok because surely I’ve would of heard from them before now. Diane x x

11

Hello, I had my MRI in November last year and wasn’t diagnosed until February this year although my GP gave me an unofficial diagnosis on 28th January. I really do understand how you feel. It is a relief to know what is wrong but the thing about that is all hope is gone. When you are in limbo, there is still hope, hope that it is curable. That is what I focussed on whilst waiting. Unfortunately it wasn’t to be and I hope for all waiting that you get definite answers but that it is treatable. Maybe I am just own tonight but I really really hate this disease and what it has and is taking from me. Sam x

12

Hello all Re MRI to results - I’m not diagnosed yet but had Optic Neuritis earlier this year. First trip to A&E to end was 4 weeks 2 days, with a ten day holiday in between. Neurologist was amazing, neuro appt on Saturday, MRI Sunday and results showing lesions by Tuesday lunchtime, consultant rang me up. Previous to this I was seen by A&E and Bristol Eye Hospital. Care on the NHS for me was amazing. Still under consultant now and their help has been superb. And I fully agree with the points mentioned earlier about you wanting something to show up - I was exactly the same. Sam

13

I have my MRI appointment on Saturday and I am currently chasing up the neuro secretary to make me an appointment so that we can discuss the findings. I find it incomprehensible that I should have to wait any longer to find out about the results…patience is not my middle name Yvette

14

Hello,

I had my MRI scan on 9th April, when they suspected I had a tumour, and I didn’t get the results until 20th May, because numerous lesions showed up on the scan and the head of the ENT team had to tell me this himself!!! Now having been passed on to neurology, I’m still waiting for the results of my lumbar puncture which I had on 8th August.

Christine

15

Hi,

I went for my MRI on 14th August, was told by the guy who did the scan that if i hadnt heard anything within 2 weeks, to call the neurologists secretary who referred me to check for an appointment. I did this, was told that the neurologist secretary doesnt get the result, my GP does. My GP said the Nurologist does, I then phoned the GPs surgery where I had my Neurology appt, and was told its nothing to do with them, phone my GP because, although I saw the Neurologist at their surgery, I am not their patient.

I decided that someone would eventually phone me or write to me.

Nothing happened.

I decided to try again last week and I went throught the same rigmarole again, but this time when I phoned the surgery where i saw the nurologist, they confirmed that there is a secretary THERE who deals with the Neurology patients.

I spoke to her, she confirmed the results where back and the conversation went something like;

Me: Could you tell me if my result have come back yet as I haven’t heard anything regarding an appt with the neurologist."

Sec: Yes, they are back, just 1 second, i’ll go and get them for you"

Sec: Hello, errm, actually there is a lot of writing on them that I don’t really understand, I am booking appts now for the Dr though, is October 29th ok at 2pm?

Me: err, yeah, thats fine. Thank you.

Now my issue is that this lady deals with results everyday, why did she go and get my results if she wasn’t confident of being able to say everything was ok. I am now worried sick, I haven’t had more than 3 hours sleep since I spoke to her. I have to wait another 6 weeks, i just want someone to tell me if there is a problem, then i can get my head around it.

I am sure there are lots of people to see and I don’t want to be a pain in the bum and ring back hassling them.

Does anyone have any advice?

sorry its a long post

C

16

Hello, I can’t be sure but I don’t think secretaries are allowed to give results. I say this because even my GP was reluctant to tell me anything let alone give me an unofficial diagnosis. The results really should be given to you by the Neurologist. If you have any queries whatever the result, you need to be talking to someone who can help you and that person is the Neuro. I know it doesn’t feel like it now but that appointment will come round soon enough! Good luck. Sam x

17

Hi, with regards to the post from crowley, what about asking the neuro secretary to fax the results to your gp? This is what happened for me, and the gp then told me the results. My brain mri showed multiple lesions and a later cervical spine scan showed three lesions. My neuro appt didnt happen till about 7 weeks after the scan, so i was relieved that the gp told me the results. Hope that helps!

18

Daisyn,Sam & Crowley, your experieces sound v similar to mine.

When I went in for the MRI, I was told that the standard waiting time for results was about 4 weeks, so I was prepared for a bit of a wait. But I was a bit naive about it all - I had naively thought that MRI would be done, & 4 weeks later I would have answers ---- not so simple.

For me, the timescale (from point of MRI) has been:

July - MRI was done.

August - received letter stating results were abnormal & that appointment had been made to discuss results. Secretary could not give out medical info, & appointment to discuss the results was 5 weeks away. I was reluctant to pester them cos I didnt want to be a pain in the bum either! But I decided I needed some info, so decided to push a bit, - I phoned my GP and also PALS, and was able to get a bit more info that way.

September - appointment with the neuro. I was told I ‘definitely a demyelinating disease, probably MS’ . MS was not his speciality so he referred me to MS specialist consultant - another 3 month wait!

December - appointment with MS specialist to determine whether it is MS whether it is another form of demyelinating disease.

Who knew it would be so complicated…

re. getting access to the results of your scan… if your scan has already been viewed by a neuologist but your follow up appointment is a while off - there are things you can do in order to get some access to the info.

You could phone GP to see if they have copy of your results. They may not be able to discuss it in full but might be able to give you a better idea of what has been found

Or you could phone the Patient Advice & Liason Service (you can find thier number if you google ‘PALS in your area’) The PALS lady I spoke to was able to arrange for someone from the neurology dpt to phone me and briefly discuss my results with me in advance of my formal follow-up appointment. In my case, it only took PALS about 10 days to organise this, so definitely worth a shot

xx

1 Like
19

Hi ElephantEyes, this is my first time on this forum. I was diagnosed with MS earlier this month, just over a year after my first symptoms. I had severe optic neuritis in Aug 2012. MRI scan 6wks later. I did not get my results until 8 weeks after the scan and I only got them then because I got my GP involved. I later found out that an appt had been made for me to see a neurologist in February 2013! So if I hadn’t chased it, I don’t think I would have been told anything for over 5 months. I suspect it was because I was symptom free at the time of the scan so they didn’t prioritise me. I had a relapse resulting in tremours at the end of Nov 2012. I waited 5wks for the results of my 2nd MRI scan. From reading other comments, it seems like the waiting time is hugely variable. It’s an awful time and you have my greatest sympathy for what you are going through. If there’s anything positive you can focus on/throw yourself into while you wait, it may help. That’s how I managed to get through the limbo period. Take care and I hope you get some answers soon.

20

Hi Elephant Eyes, I waited 8 wks and 5wks for the results of my 2 MRI scans. I’m sorry to hear what an awful time you’re having. I hope you get some answers soon. I got through the waiting period by doing lots to keep me very busy and found some positive things to focus on. It took just over a year since my first symptom in Aug 2012 to eventually be diagnosed with MS this month. Take care. Xx