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.