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I’m back

Doubt anyone remembers me but I’ve posted on here since 2016. Long story short but got CIS diagnosis in January 2017 and started on Rebif until December. Taken off due to low wbc meaning I couldn’t have elective surgery. Plan then was for 6 monthly mri/appointments and close monitoring. My case has been now discussed twice at a local MDT meeting. I thought my scans had been stable so wasn’t expecting much in the latest letter. However, I’ve come home to a letter saying they’ve noted a subtle change in my cervical spine so I now meet the criteria for relapsing remitting ms. Although I’d been expecting this at some point, I’m a bit floored by the letter. My neurologist is planning to see me but I don’t yet have an appointment. I’m unsure if I’ll be offered any treatment as don’t think I’m classed as active ms but can’t have interferons due to previous history. I’m not sure why I’ve posted but think I’ll need to access everyone’s support again please. My symptoms are mainly altered sensation arms/legs at night and sometimes during the day. I’m unsure what I’m meant to report as not sure what’s usual for me now anyway. Sorry to ramble ☹️

Hello @smurf69. Well at least you’ve had a while to think about the ‘porspect’ of MS, RRMS to be specific. It must have been a shock. Have you always had altered sensations since 2016? Have they ever gone away? My understanding is that you don’t have to have active MS to start on DMTs. I’ve had altered sensations since 2016. It’s not painful so I feel I can’t complain. But I’m so BORED of it now. I think it’s coming to terms with the fact that the spectre of MS just isn’t going away which is tough to embrace. Anyways, you’re in good company, it’s great that you see Shift as being supportive. I mean, the good thing is that at least you are under the monitoring radar. Take care, keep posting! X


Hi @vixen, thanks for your reply. Symptoms haven’t really gone I don’t think but I’ve just got used to them. I occasionally get other altered sensation but they come and go so I don’t report them (not sure if that’s right or not though). I don’t think they should send that info in a letter if I’m honest though. They probably thought I was half expecting it but wasn’t expecting it now as she’d said my mri was stable. They’ve now said they can see subtle changes on my cervical spine which have been there since earlier scans but are only being acknowledged in retrospect. I remember before that my neurologist said you aren’t always eligible for DMTs if not active ms. Not sure what I’d prefer at present as still bit shellshocked.