Hello,
Can you please read my story and advise? My symptoms are tingling in hands, feet and face, burning pain at the back of my head, muscle stiffness and spasms, general tiredness, bumping into things, suddenly feeling dizzy and sometimes like the ground has shifted under my feet, seeing black spots and the so called floaters. Tingling, stiffness and pain has been occurring only on the right side…that was until 2 weeks ago when it started on the left as well but still most of the time the right side is affected. I’m having symptoms every day lasting from minutes to hours at a time and multiple times a day. It is affecting me very much, feels like my life has changed in the past 6 months.
It took 4 months to see neuro after GP referred me. Neuro examined me, reflexes are fine but due to my symptoms MRI was ordered over the computer whilst I was in the consulting room. I remember neuro saying brain as well as spine scans and that I would receive a letter about MRI appointment within a few weeks. I waited 2 weeks then rang the MRI department to find out if they could tell me when I could go as was worried the letter might have got lost in the post. I was on hold for a while, he said he was going through my file etc. then when finished he asked if I could go for a scan the next day. I was very surprised but of course said yes so had my MRI already. However, they told me they could not do my spine as neuro requested brain only and they suggested contacting the medical secretary for info as my next appointment with neuro will only be in November. (Neuro told me that’s the earliest possible, 4 months after this first consultation we had.)
I could not speak to the medical secretary yet. Just wanted to ask how common is it to have brain scan only and not the spine? Neuro put brain only but said both when i was there… and MRI department said the spine bit might have been simply missed from request… so I need to confirm. Also it seems weird to me that when I called and he went through my file then he asked if I could go the next day. Like something was forgotten somewhere…also when checking in for the scan, the receptionist asked for my appointment letter so I told him I hadn’t had any and that I had been invited in over the phone – he seemed very surprised and couldn’t find me in the system at first, only when he tried to look me up somehow else. Is it just me or it is weird?
Thank you for your time.
I’ve had three MRI scans, each one was only my brain. The scans were done over the first few years of me being diagnosed with MS, the first with a lumber puncture & various other tests confirmed the diagnosis, the other scans were to compare the progression of the disease.
Ask the reason for the spine scan, it might put your mind at ease & help stop you worrying.
Good luck
Rosina
I was diagnosed as RR with a single brain only MRI, but recently having been review by an MS specialist neuro had that dx reclassified as PP. All between January and June this year.
I was then told I’d see him in six months but when the appointment letter arrived it was twelve months later.
Good luck with your consultations.
Paul
Thank you, Paul and sorry to hear that dx have been reclassified as PP.
I hope to get my MRI result within 2 weeks as they promised and hopefully soon will find out what was that about the spine scan. It’s hard to live like this…trying not to think about it but difficult to forget and relax when symptoms remind me so many times each day.
My first neuro ordered an MRI of my brain only and didn’t manage to explain what it showed in a way my GP could understand so I had no chance! I changed neuro and reading between the lines of what my current neuro said at my first appointment, he didn’t think much of having an MRI just of my brain.
My current neuro asked me to have another MRI, this time to include my spine as well as my brain - it didn’t take a lot longer but the results were apparently a lot more informative. I don’t know if that means I’ve got more lesions in my spine than my brain, if the second hospital has a better scanner than the first or if my current neuro is simply a better communicator.
Thank you for the input, Mitzi. Interesting thing about my consultation was that MS never was mentioned. Neuro just examined me, especially my eyes for ages, and listened to my symptoms and asked tons of question which sounded like an “MS checklist”. But I deliberately never said I was suspecting having MS just waited what the neuro was going to come up with. I was gonna bring up MS only if he hadn’t wanted to send me for an MRI. Anyways, so at the end he said an MRI is needed to check if there is any inflammation and that diagnosis might be a lengthy process as MRI might come back not being able to explain my symptoms. He also said a lumbar puncture might be necessary if all other negative. So he prepared me for a possibly long and frustrating process. But he never actually mentioned MS - I guess he didn’t want to scare me but also I got the feeling he knew that I knew, just neither of us wanted to bring it up. He said next consultation could only be 4 months from now but I’d be able to communicate with him through the medical secretary or if necessary on the phone. All this seemed good enough for me, so needless to say how surpised I was when found out that MRI was only ordered for my brain and not for the spine as well.
I was diagnosed with 2 MRI’s on my brain approximately a year apart (at that point MS wasn’t suspected!) but they ended up being part of the reason behind the DX (symptoms were the other reasons!)
red
Thank you, red.
I called medical secretary on Monday to ask if I’d be getting a spine MRI too or not but she could not find any specifics about that. Consultant only put down MRI on my file and the request sent to the MRI dept said brain only. So she said she’d email him to double-check and took my mobile number. Of course I haven’t heard from her! This morning the line was busy then after 3pm only her voicemail…guess she left early…On Monday I’ll call again and frankly had already enough of her. Cause it’s the second time she didn’t call me back, earlier had a question so left a voicemail and never heard from her. Only reason I didn’t bother to call her about that again was that a helpful man in the appointment booking department answered my question. Omg, I hate when people are not doing their job! And hopefully brain MRI results will be back this coming week and can find some answers…as my symptoms are getting worse…
Hi Xenomorph,
Hope you are doing alright, ive been away so haven’t managed to be on here unforunately 
the fuss over my MRI’s was a nightmare, in fact any hospital trip i have had has been an abosulte nightmare so i can feel your pain with that!
Hope everything went well - have you had the results yet?
Red
x