carlsb 20/04/15
Last reply 2 years ago
Frequency of MRI scans


I was just wondering whether I should be more pushy with my doc regarding MRI scans and wanted to see your thoughts. I’ve had one MRI scan when I was diagnosed in Jan 2013. I was on a trial later that year and had monthly scans over a 6 month period which they shared with my Neuro as it was based out of the same hospital. Since the trial finished, I haven’t been offered a scan and asked the neuro at my last appointment in March 2015 when my next one would be and he said probably not for another 6 months after I’ve had some time on Tecfidera (I am still waiting to be put on Tecfidera!).

It all seems really slow. I have lesions on my brain and spinal cord. My trial doctor was brilliant and talked me through the scans and my black holes.. but it will be nearly 2 and half years since my first MRI on the NHS by the time I get my next one. Just wondering if I need to be more insistent and being too passive here or do I need to manage my expectations around this? 🙂

Thanks everyone!

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2 years ago

Sorry I am not going to provide any advise/suggestions but you have me think now, I was diagnosed over 10 years ago and haven’t had a scan since the original one in 2004 which they used to form their diagnosis. So I wonder what is the rule of thumb regarding frequency of MRIs

2 years ago

@carlsb , as with everything these days, these MRI scans cost money. So, there’s a fair chance that they won’t do another scan, unless there is a clinical need to understand what’s going on at a point in time.

I’ve only ever had one, back in 1997!

2 years ago

Wow ok… I totally misunderstood this then! I assumed MRI’s were part of the overall monitoring of disease progression, so assumed I’d continue to have them. Maybe infrequently, but thought you got them still. But sounds like I got the wrong end of the stick on that!

When I was first diagnosed, my neuro encouraged me to sign up to a Clinical trial, saying one of the big benefits would be that I would get 6 months of MRI scans and this would be much more than I would get via the NHS, so beneficial towards my care. Since then, I’ve assumed / thought that there must be some value in having scans so assumed it was ongoing, but obviously this isn’t the case!

He did say I would get a scan after going on Tecfidera… so I’ll hold him to that 🙂 but reign in my expectations generally I guess!

Thanks everyone

2 years ago

Hi! I was diagnosed in 2010 & only had two scans! (Both times just to make sure I was actually having attacks!)
But after you start treatment they usually do an MRI every 6-12 months – at least that’s what they do with me! (I’m on tysabri!)
& don’t worry too much about the lesions in your brain – as I’ve learnt from my scans, they tend to flame up and go away themselves, sometimes with the help of steroids! (That’s if you have relapse remitting!!) but best of luck with your treatment!!!x

2 years ago

Hi, sadly I think you’ve experienced the joys of a clinical trial and then the bump back down to earth of typical NHS care! From my experience (3 MRIs in nearly 8 years) MRIs have most frequently been used to aid decision making around treatment or diagnosis. So my first was prior to diagnosis in 2007. The next was at the end of 2012 as I was switching to fingolimod and my neuro needed to see evidence of ongoing disease activity for me to be eligible. I’ve now been on fingolimod for 2 years and have just had my third scan to see what my disease activity is like as my symptoms are very stable and my neuro wants to confirm that the activity is as asleep as it appears! Essentially the frequency of your MRIs will boil down to a combination of your disease activity, your treatment and how closely it requires monitoring, and to some extent local funding and neuro preferences. It never hurts to be assertive when it comes to your care, especially if you have concerns but I don’t think MRIs usually form a massively regular part of routine ongoing care. In many ways, if they are linked to disease activity, the fewer the better!! x

2 years ago

I had a diagnostic MRI march 2003 to confirm PPMS and never had one since despite going from a limp to full time wheelchair in that time.

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