Just curious.
Me; October 2019. (I have PPMS, dx’d 2012. Us 10-15% PPMS’ers do tend to be the ‘out of sight out of mind” posse..
)
But, still. 6 years since last seen!
Hi clucker Pigeon2024
Same here, haven’t seen my nurse either F2F since then either, all phone calls, got a letter recently F2F with her in January 2026, mind I’m SPMS and she’s already told me that’s there’s nothing for me, because I don’t have relapses
Hi, Clucker_Pigeon2024. I don’t have PPMS or even SPMS. I’ve got RRMS and although I have seen a neurologist yearly for the last few years there was a period before that when, such as yourself, it was possibly 6 years since my last appointment. And I’ve not always seen my ms nurse every year either. I am seeing my ms nurse in two weeks but, it’s been quite a few years since I last saw her. It was during those COVID years. A distant memory now!
Must be twenty years and not much point with PPMS, as there is no treatment to monitor. My body tells me all I need to know about progression and self management suits me well enough.
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Every 6 months.
However, I’m on the taper from a clinical trial and my NHS consultant also oversees the trial. Level of care is in a different league.
My recommendation: get on a clinical trial for a new medication, sponsored/funded by a big-Pharma company.
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Hi @Clucker_Pigeon2024 et al.,
I was diagnosed with RRMS in 2018 - I’ve seen my neurologist twice but have check ups with the ‘MS Team Nurse’ once every 6 months roughly. Although I have an online appointment with my nurse tomorrow - so really, just check ins and bla bla bla updates.
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MS Nurse every 6 months religiously. Neuro in person nearly 8 years.
Hi
Not seen my consultant for almost 10 years. Firstly he was never at my annual review, then the pandemic hit and all visits were changed to tel calls. They have never offered me a hospital appointment since. I feel now I am SPMS there is ‘nothing’ they can do for me so they have washed their hands of me.
Paula