As the title suggests I am curious at how often/ reasoning you all get a MRI. I have been diagnosed for 4 years and in that time I have had 4 which I think is rather a lot, given that I would say i have not had a relapse that I can recall in that time. I had a MRI in May of last year and received a letter stating there was not significant change which was pleasing. I also had an app with my neuro in November and he said everything looked great ( or as good as it cud be). Then he said I was to have another head and full spinal MRI which I thought odd but went for this on Thursday. While there I was told I would be having contrast for the scan as my letter from the neuro said I had 'very active disease". I was soo shocked at what she said I didn’t even answer her and have been soo upset since. I just don’t understand how I can be doing 'great’then have that said. I really feel like I have not been told the whole truth about what is going on, just wondering if any one else has had this experience? Thanks, Charlene
I have only ever had 2 MRI’s. The first was back in 2002 when I first was referred to a neuro and lead to my diagnosis. The second was a few years later, 2006/7 I think.
Ive had 2 in 5 years .
The second one only because of some changes in symptoms.
I dont think the neuros do them as a routinely thing, only if and when theres a possible change in symptoms ?
Having said that, I know a lady with MS who attends the same clinic as me, but see’s a different neuro, she was diagnosed around the same time as me and with the same level of MS, yet she has a yearly scan arranged by her neuro !
One in 1998 and can’t see why you need more for PPMS, as I don’t need to be diagnosed more than once. Of course, the situation is very different if your treatment needs monitoring.
Like Whammel I’ve only had one which along with a lumbar puncture was used to diagnose PPMS.
I was recently, out of the blue, sent an appointment for an MRI. I only had one last year and couldn’t see the value of another. I’m SP and there are no changes. So I cancelled the appointment only to be told that my neurologist (who I no longer see since my rehab doctor is more useful) had scheduled it a year ago, why, I don’t know.
I truly hope they offered the slot to someone on a waiting list, rather than just wasting it. I did say this to the appointments person I spoke to, but they probably don’t get much option as to reusing cancelled appointments.
I thought it was utterly ridiculous. In my 21 years of MS, I’ve had at least 10 MRIs. Partly because of my chequered history of DMDs and side effects. And I’ve seen the point of most of them.
I’ve only had one. That was in January 2001 and led to a diagnosis of “probable MS”, although the junior doctor who gave me the results didn’t actually say that. My neneurologi said he’d refer me for an MRI when I saw him last year. He said it would take a few months for the appointment to come through. That was 10 months ago.
One for diagnosis nearly twenty years ago and another one a couple of years ago, requested by a different neuro to my usual one as we were discussing a possible change of DMD and he wanted to get an up to date picture. Seemed reasonable.
I had one for diagnosis in 2007 and some for a drugs trial, but only one for my MS. I haven’t seen my neuro in 10 years, although he obviously always tells the DVLA that I’m OK to drive every couple of years! I’ve got SPMS so assume that there’s no reason to see anyone.
One in 2011 which led to possible MS diagnosis Another in 2012 which led to confirmed diagnosis Neuro wants another one this year to check if DMD is working or not. Guess that’s a good thing that they’re keeping an eye on things. Not looking forward to another round in the “chamber” though
I have had 2 the first when I was ‘wobbly’ and the second to confirm my diagnosis
Interesting topic… I’m undiagnosed my last appointment in November my Neurologist said I have probable MS. Since I had optic neuritis in July 2016, I’ve had 3 MRI scans and will be having another at the end of the year.
Thanks everyone, it does seem like I am getting a lot of scans compared to most and I see my neuro every 6 months aswell. It is probably a good thing that I get such good care but I can’t help but wonder why I get soo many MRI’s and will have to ask a few more questions when I see him at my next appointment, fingers crossed the results are good! Thanks, Charlene x
Hi Charlene. I have annual MRIs. I might be wrong, but I think that’s standard care at my hospital for a lot of us. They’re always with contrast. I used to have them quarterly when I was on Tysabri, but since I switched to Tecfidera I’m now checked annually. I don’t mind though, I actually quite like them. It’s just a chance to lie down for half an hour, while being entertained by some mental noises. I never understand why people don’t like them
I’ve always rather liked being in the scanner too. The noise is kind of mesmeric. I often fall asleep. And have absolutely no clue how long the scans last. Time stretches and contracts in a time machiney sort of way. Maybe familiarity changes the nature of the time spent in the scanning tube. I can’t remember, but I was probably a lot more nervous my first time.