top tip

Always ask for a copy of your full MRI report and always take a friend or family member along to appointments. After being told my MRI was normal, i saw my GP this morning and asked for copy of scan report. It consisted of 2 lines about my lumbar spine but no mention of head/brain scan!!! My GP thought the neuro must have changed his mind and decided to only scan my lumbar spine but i assured him i definitely had my head scanned. He is now going to chase up the results of the brain MRI. He isn’t happy and neither am i. it doesn’t exactly fill you with confidence does it?!!

Hi, did you have your lumbar spine scanned as well as your head? Do you think youve got someone elses report? I’d be fuming!!!

Yes, lumbar spine and head. Fuming… i certainly am!!! Report says “page 1 of 1” then “mri spine lumbar sacral” & 2 sentences. at the bottom it says “examinations: mri spine lumbar sacral, mri head”. Looks as though they have forgotten to even look at or report on my head!!!

Hi. I’m going to get a copy of mine as I just got a letter to say it was normal but I know I had one of c/spine 4years ago that mentioned some disc narrowing but nothing said this time. It may be in the report just not the 2linelletter A

Hi, yes i had lumbar spine and head. I think it is my report, just that they haven’t completed it!! It is literally 2 sentences to say lumbar spine normal. it is page 1 of 1 so there are no pages missing. at the bottom it says “examinations: mri lumbar spine, mri head” yet no mention of a head in those 2 sentences!!! You are right… although fuming doesn’t come close!!!

Don’t get your hopes up though Arwen… my entire report was 2 sentences! Wonder where the rest of it is!!! & how often this happens?!!

Don’t get too excited arwen! Mine was only 2 sentences!!!

Blimey, that’s terrible, and, as you say, certainly doesn’t instil confidence!

You have every right to be fuming. At least your GP is on the case and will get things chased up for you.

Now you have more time to wait for more answers. What a nightmare.

Stay strong, Birdlady xx

I would be flipping fuming too! The hospital I’m going to I’ve already had some trouble with my mum (didn’t part of hospital, but still) and it sounds like something they’d end up doing! I’m so happy your GP is just as upset about it as you are. Hopefully that might speed things up a bit for them to MRI your head this time and not just do half the job!

Lots of love and patience your way Birdlady!

Tsuki xxx

Yes purpledot, yet MORE waiting. It seems we are all well practised at it!! Tsuki, i hope the hospital do a thorough job with you. Have faith and like i say, take someone with you and ask for copies of test results. If i hadn’t got that report and took my mum with me who noticed, i wonder if i would have even noticed or if anybody else would?! I am just extremely grateful to have a wonderful, lovely GP!! Next stop is gabapentin or pregabalin… but i have to stop breastfeeding first…

Hey Birdlady. Hence why I am having someone come with me, I’ve been having my partner come with me to all my GP appointments as well. Good ol’ cognitive impairment! I’m going to be asked to have copies of any paperwork/test results after reading your trouble and another member who found out by going back to their GP many moons later!

I’ve heard good about gabapentin and pregabalin for nerve pain. I’m on amitriptyline at the moment for all the nerve twitches in my legs at night and it’s doing a good job. Don’t let that rule you making the best for your child though! :slight_smile:

Best of luck,

Tsuki xxx

Hi, yes and taking my mum with me to my next neuro apt. I was thinking if I am unable to take someone with me in future I will take my dictaphone and get all thats said recorded. It sounds like your GP is a good one and is aware of what to look for when it comes to reports. The last neuro I saw wrote me a letter after my consultation, he got a few things incorrect that I had mentioend to him symptom wise. I am going to make a copy of the letter, correct it and give it to the next neurologist I see next week. xx

Good - always chase it up & tell them when they are wrong. have chased up my missing mri results this morning. them - hmmm… what makes you think you had your head done? Me - the fact they said “we are scanning your head now” Them - the computer says it was just your lower spine. After much insisting from me and lots of “computer says noooo” from her, she checked with radiologist then rang me back saying “you were right!!”. It was like she was surprised?! They have now sent my results to my neuros secretary. She can confirm that she has the results but can’t discuss them. My consultant will see them thursday but she can fax them to my (extremely wonderful) GP. What a flippin’ palava. That took almost 2 hours of chasing!!! Like when they lost my referral for mri form!! While i was at it i chased up my opthamology referral. They confirmed the orthoptist had referred me but the referral form never reached them!!! Whatever next?!! Why me?!!

hi Birdlady - know the problem well. Waited for neurophysiology appointment - waited and waited. Phoned them - no referral said I had a copy of it. Faxed copy - 19 phone calls later got appointment. Referral for scan - 3 months later no referral had follow up appointment with consultant who said it was my responsibility to chase the referral! got form for physiotherapist handed to me to take to physio dept for appointment. Went and found right department asked them to make me an appointment - told no they would write and let me know. I was there in person but no would waste paper and postage to let me know. Sometimes I think am I am living in a French and Saunders sketch.

I was in a similar situation. Waited 16 months for MRI brain and spine results. They were not done in my local hospital which made it almost impossible for my gp, pain management dr or physio to get hold of them. In the end somebody told me that ALL drs and consultants email addresses are available online so I emailed the neurologist that ordered the tests and asked home to chase them up. He had got a promotion and left the hospital but still had contacts with the consultant who was meant to take over my case. Sadly they came back saying I have 11 white matter lesions consistent with demyelination and satisfy the McDonald criteria for dissemination in space. Dr Google at the ready and found out that it could be ms. This had not been mentioned since it had been ruled put 6 years ago after a clear brain scan. I had an appointment with specialist ms neuro last Thursday and got my official dx. I think that we as patients have to keep pushing and checking because mistakes can and do happen. I wish you lots of luck in finding out your brain results.