I have PPMS and symptoms for 18 years but only diagnosed 8 years ago. The last 2 years my mobility and balance has got significantly worse. I use a rollator inside the house and out and have a SAFO on my leg with footdrop. My question is, I asked the Neurologist last year for a MRI as I was convinced there would be more lesions and I had Cervical Spine and Head and they showed no new lesions. This I was very surprised at as my symptoms are much worse. The Neuro said it was just progression. Surely I should also have an MRI on the rest of my spinal cord? I have an appointment in November and will ask but wonder what your views are? Thankyou.
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Probably a case of smouldering MS and not much point in having another MRI, as you can’t correct damage already done anyway.
Personally, I think it is more important to keep your muscles as strong as possible and time spent with a physio might help.
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Thankyou
Just progression?
Not in any universe is that an acceptable outcome!
If your progressing symptoms do not equate to new spinal lesions then fair enough, the need for an MRI would not correlate, so no point. But, lower limb function is so entwined with spinal damage/lesions that you should 100% be offered a full spinal MRI. No ifs no buts. It must be ascertained if that is why you have these presentations.
I have PPMS and retired from NHS physiotherapy eight months ago, I know just how complacent doctors can get, having to fight for patients being dissed off.
Do not accept it.
But! Don’t go in guns a blazing, tell your neuro it’s not a case of just accepting, you need to know. If not just for the sake of knowing but for critical proof in going forward eg: claiming benefits.
Good luck and please, keep fighting.
Hi @notpastit I’m afraid I have to agree with @whammel on this one, I have SPMS, I’ve had it for 20yrs and like you my symptoms have just got worse, with a few new ones thrown in, I saw a neuro recently, first time sine 2019 and I voiced my concerns about this, I’d had 2 MRI’s in the last 2yrs and the radiologist compared them to older ones I had done, there wasn’t much difference and I was told the MS is progressing off the old lesions, so therefore there’s nothing they can do.
Now it’s totally up to you, whether you what to go back and ask for another scan, but even if you’re told there are new lesions what are you expecting to happen,
Jean
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Why would anyone not want a full spinal scan if more spymptoms are presenting?
It’s all very well saying you had two MRIs in two years but that’s nondescript.
OP is stating they only had a cervical scan and not a full spinal. Of course they should be offered/ask for another scan.
You’d rather they just sustained in limbo not knowing for sure if a new lesion has formed somewhere?
Just accepting things ‘as is’ is not being pragmatic.
OP, ask for a full scan, if that shown nothing new then fair enough, but it could show something and if you want to know if there is, then that is one hundred percent your prerogative.
Firstly @Gman Please don’t get shirty with me, I’m a bit too long in the tooth to take that from anyone and especially on here, secondly if you read my message I said it was totally up to @notpastit what they ended up doing, if they want one fair enough.
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Internet perception, I wasn’t being “shirty,” I was being blunt.