I was diagnosed with MS about 8 years ago and have had MRIs but have never been shown them. Is this normal or should I be shown them? I would like to discuss the progress of my disease with a neurologist / similar and see my scans.
Hi, you can request a copy of your MRI scans (put onto CD), it costs around ten pounds, contact the hospital MRI department. It’s quite interesting to see the scans at home on my laptop. You can also request a copy of the clinical report of the MRI scans. Your GP should be able to print this off for you. My old GP surgery used to send me a copy of the clinical report in the post without me asking. My current GP surgery I have to ask my GP for a copy when I have an appointment.
When did you last have an appointment with a neurologist?
About 6 months ago. Getting a scan this month though so thought I should raise the subject with them of wanting to see the thing.
I keep on saying this: Get a copy of the NHS Constitution!
You have a right to get a copy of any report sent to your GP (from a Consultant or an MS Nurse).
A well run hospital does this as a matter of course.
If you do not get it, you can go to the relevant PALS.
Just note that there is nothing in the Constitution that says the report has to use words that you can understand.
Like Lenney says, you can get a copy of an MRI on CD, usually with the software to read the scans, for £10-£20. It can be a good idea to take a blank CD with you.
I had an MRI last year and asked for a copy of it to be sent to me. It cost me £28 but they put it on a CD for me so I can see it on my computer. Very interesting. I was diagnosed in 2005 and could see how the MS had progressed.
Ask your MS Nurse or Neuro who you should ask to get a copy sent. It was very easy.
I had copies of 2 of my MRI scans on CD. When I changed neurologists I offered them to the new chap, he said he’d send the CDs back to me. But he never did.
To be honest, I couldn’t see the point of looking at them without the guidance of a neurologist so I never worried about chasing them up, or getting copies done since then.
The most informative time was when I was actually diagnosed, I saw the loveliest neuro, he showed me the scans, pointed out the lesions, was immensely helpful; then promptly retired!!
Thanks all. I will ask for them it’s weird not have had anything shown to me.
Following my MRI scan I got a copy of the neuros letter. I’ve no interest whatsoever in seeing the actual scans -
I wondered do those who don’t have m.s. have perfect ‘blob’ free MRI’s?
Similar when I went for the flu jab, nurse started reeling off all the possible side effects - politely?? told her I didn’t want to know.
I like to see mine Edingirl. It makes sense of the symptoms that pop up and having the neuro explain which lesions affect which part of the body. Very interesting to me. I was a Medical Secretary though so I am interested in all this stuff. I know others aren’t so interested.
Hi everyone. This made me think. When I had my last neuro check-up he ordered an MRI, as I hadn’t had one since diagnosis. Several weeks went by; the GP’s surgery hadn’t heard anything and neither had I. So I called the hospital and was told that ‘MRI shows no significant changes’ and that if the surgery wanted a copy of the MRI report, they would have to request it from the hospital. The surgery don’t seem especially bothered either way, but did say that normally they get a copies of MRI reports.
This morning I spoke to the neuro’s secretary. Again she said that the GP has to request it, but I said that in any case I want one. She is going to ask the neuro (again). Just checking - do I have a right under NHS constitution to have this?
Thanks - Louise
I’m going to be more assertive in what I ask for and do loads of my own research. After diagnosis almost 8 years ago I received no treatment. I wasn’t even told to take vit D. I had relapses treated with steroids when I’d arrive as an out patient at hospital barely able to walk. After having my twin babies I had a relapse and asked to see a neurologist. I was told at that appointment that treatments are best started early after diagnosis ( bit late to tell me that) and was put on tecfidera. So basically they left me to rot over 7 years. You really do have to take control over your own treatment and get as much information as you can. I think I just got lost in the system and wasn’t anyone’s responsibility. Does make me quite sceptical about how things are done.
Louise. When I have had MRIs in the past I have always asked for a copy of the report to be faxed to my gp. All these people are part of my ms team! U have since asked my gp for a copy of everything to do with my results since my diagnosis last year. I’m keeping a file on my ms for my own reference. My ms, my health, my body. Bottom line, no one is going to be as concerned about my healthcare as me!
What you should look at is page 8 of the NHS Constitution.
There will be more in the Handbook to the Constitution, and even more in the Appendix. You can start from this sentence:
“You have the right to know the outcome of any investigation into your complaint.”
i enjoyed seeing my eye balls from the inside and that was about the only positive i perceived from viewing my prettiest of pictures.
i love the technology which is afforded us these days and i will forever be grateful to have exploited it. but beyond being useful in diagnosis, the MRI is overrated i think.
the nature of MS is that you can be littered with lesions and yet be symptom free; or have a heap of symptoms and next to nothing show up in the scan.
nothing about your prognosis can be determined and so really the only significant ongoing benefit, is to those who wish to monitor the progression (to a limited degree) of a disease whilst someone indulges DMD (or not).
as a patient it was little more than a novelty; like getting a caricature painting done at a fete! perhaps i am missing the point?
I am of much the same opinion as you Paolo. Nice to see a picture of my brain. But ultimately meaningless to me.
Edingirl, I wonder if there is a human rights issue in this?
I had one MRI when I was diagnosed in 1990 and haven’t had one since. Wasn’t offered one an didn’t ask for one.
I don’t see the point. My MS will progress without my help. I do take any treatments offered and just hope for the best. I
don’t want to sound flippant but having regular mri’s is not going to change the outcome.
I think this may fall into Human Rights issue Article 3 Neglect. If you wanted to write feedback or a complaint to the hospital to make them aware.