I’m currently awaiting diagnosis and at CIS stage. My neurologist thinks I meet the new criteria for MS but my MRIs are being reported as non-specific white matter changes so she’s not being backed up by the radiologist. I’ve had 4 MRIs since August 2016, the most recent in April 2018. Plan is for my case to be discussed with other experts at a MDT meeting.
I’ve had a letter from my neurologist which stated that my recent MRI remains very static. Do you think this is the same as unchanged? I thought it did until my husband queried it which has made me doubt myself.
Thanks
Hi Smurf
Static does normally mean unchanged. So it’s possible they’ll say you’ve not progressed in MS terms, therefore you’re still CIS. But have you had any relapses over the past couple of years? Anything that’s not been reported to the neurologist? Or that’s not showing up in the clinical data?
The neurologist might be convinced it is MS, but without relapses or changes on MRI, you won’t qualify for any DMDs. But then if you’re not having relapses, you don’t need the protection offered by a DMD.
I do understand that basically you don’t want to be abandoned in limbo. And a proper diagnosis, even of MS is better than no diagnosis at all.
But absent relapses, it seems unlikely.
Sue.
Hi Sue
Thanks for your reply. My symptoms are ongoing, mainly altered sensation of my limbs overnight - throbbing arms and hands and tingling feet but no relapse as such.
i was on Rebif last year until it lowered my WBC. I’m not sure what they’ll class me as but guess if CIS I’d be eligible for first line DMDs and if non active MS nothing. Thing is I don’t want treatment I don’t need but don’t want to get worse.