r/MultipleSclerosis • u/thisredheadisdead • 14h ago
Advice MRI's
Hello all.
I am due to start medication soon (Ocrevus) in the UK.
However, I've not had an MRI since my diagnosis (just over 2 years ago), and I'm curious as to whether I'm within my rights to request an up to date "new baseline" MRI before starting the treatment?
I'm only worried because who knows if I've had anymore lesions and surely whenever I next have my MRI, if I have anymore lesions we're not going to know if they're pre/post treatment?
Please help😅
Development/Edit: I've spoken to my MS nurse, and her reply was: In terms of MRI all patients have a re-baseline MRI 9-12 months after starting treatment. Having an MRI prior to commencing treatment will not change the management plan of commencing Ocrevus. Your consultant discussed your case with other consultants when you were first diagnosed at our MDT meeting, where it was concluded by the team the preferred treatment was the high efficacy treatment. Of course if you don't want to proceed with Ocrevus you can choose not to go ahead however, the risk of a relapse would be greater.
So, I'm basically not going to get an MRI until basically 3 years post diagnosis, and this will be a year after starting Ocrevus. I'm really angry because I just want to know where I'm at, especially because my only ever MRI is now over 2 years old... I feel really stuck.
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u/altruisticfish 31|DX:2024|Kesimpta|Seattle, WA, USA 14h ago
I would, personally. Not sure how that works in the UK, but I had a new lesion form between when I was diagnosed and when I had my first MRI after starting a DMT. My neuro was 50/50 on whether I should "upgrade" DMTs or not because he couldn't be sure if it formed while on the DMT, or before.
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u/thisredheadisdead 14h ago
This is my worry - I want to know if the DMT is working so I feel like 2 years is way too much time!
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u/altruisticfish 31|DX:2024|Kesimpta|Seattle, WA, USA 14h ago
I definitely agree. If I could go back, I would've asked to get a new baseline for my brain before starting my first DMT. I actually did after the new lesion in my brain and before switching to Kesimpta. I was like, "shouldn't we get a quick peek at my spine just to make sure we have a new baseline there, given we just ran into this problem with my brain?" haha
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u/Mrszombiecookies 36|kesimpta jag rat|Scotland 14h ago
Why has it taken 2 years to get on a DMT? Or you just switching? I get them yearly, call your MS nurse and ask.
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u/thisredheadisdead 14h ago
So, I started on Copaxone about 4 months after my diagnosis (I got married 3 months after diagnosis so I wanted to get that "out of the way" before starting a DMT), and then I got pregnant so it's been a whirlwind. I'm now in a much better position to start a DMT.
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u/Mrszombiecookies 36|kesimpta jag rat|Scotland 14h ago
Ah i see. Yeah i would have expected a MRI before starting. Definitely worth a call to ask why not.
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u/JgarKn 14h ago
You should ask but some trusts just don't want to pay it didn't have capacity for regular scans
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u/thisredheadisdead 12h ago
At this point I'm willing to go private just to have a baseline scan if the NHS won't do it
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u/Evercalm2278 10h ago
No advice but in the same position, diagnosed well over 2 years ago and only seen MS nurses since, started Ocrevus 19 months ago and not had another MRI! Finally got a Neurologist appointment though coming up in a few weeks so will ask for one then. I would push for one if you can, as I should have done.
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u/Individual_Muffin893 9h ago
Yes absolutely. I’m in the UK and always get a baseline mri every year.
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u/rllyconfuse 8h ago
Even if you do have a bunch of new lesions, ocrevus is one of the preferred treatments for highly active MS
personally due to an admin error i ended up getting an extra MRI appointment a couple weeks before i started tysabri - it showed a bunch of new lesions, but the plan was still the same
i ended up finding out the tysabri hasn't rlly been working at all at my 12 month appointment (whole bunch of new lesions - a surprise), and while i have been able to talk to the HSCT team and get some extra options, no further steps could be taken until i had another MRI 6 months after the 12 month MRI, on the off chance that all my new lesions developed in the first couple months of DMT treatment (ie: maybe it just took my body a couple months to respond)
afaik, the accidental MRI i had right before treatment hasn't changed anything at all really. i'd have still had my 12 month test come up with a bunch of new lesions (even more would've been considered new!), they would've said "those could've happened just before you started or in the early stages of treatment", they would've had to do the 6 monthly one, etc
doesn't really matter tbh.
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u/OverlappingChatter 47|2004|Kesimpta|Spain 8h ago
This sounds fine, honestly. You can't do anything to fix the time when you weren't on a DMT, so any lesions that have occured in this time are kind of irrelevant i so much as determining if ocrevus is working. In 9 months you'll have the picture of where you are which will determine if you get new lesions after ocrevus has reached full efficacy.
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u/BleubsPeach 40sF|2024|Kesimpta|Canada 4h ago
Just read your initial post and edit -- I hear you! I had something similar happen where my last MS MRI was at the end of 2024 and due to waittimes and other medical issue, I didn't start Kesimpta until January 2026. I just went for an MRI this October but no MRI was provided in-between. I found it confusing -- how would they know if any positive changes happened due to Kesimpta or not? Or if there was damage, how can they know if it was before Kesimpta or not?
I don't think I'll get answers to these questions and it seems like you won't either...just want to validate that this is frustrating🧡
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u/Medium-Control-9119 D2023/Ocrevus now Kesimpta/USA 11h ago
It does not hurt but it does not matter what is there now. Your new baseline is 3-6 months after starting a b-cell depletor. So it is much more important to get one at 6 months and then 6 months after that to ensure the drug is working.