This is a hugely weird one and I do apologise but I’m a little bit shellshocked !
Been to see my neuro this morning - this is the schoolboy neuro (he’s about 12) who replaced the excellent Mike Boggild at The Walton Centre. Very nice bloke and very approachable (this refers to the new schoolboy neuro but also the excellent Mike!).
I was diagnosed with RRMS in 2003 after having my first clinically recognised ‘episode’ in 1989.
Over the years I’ve been on Copaxone, then Copaxone and Mitox and my own GP prescribed LDN for a while (as requested by Mike at my instigation !) which I tried for a year and then stopped as it didn’t appear to make any difference in addition to modafinal, gabapentin and amantadine and probably other stuff I’ve forgotten.
I was greeted today with the news that my MS ‘type’ appears, given my history, to be more like PPMS although I am now ‘of an age’ to be moving onto SP (which I suspected). Saw my nurse a few months ago who wrote to my neuo and suggested I start on Fingolimod - still experiencing what I thought were mild relapses but as I’ve been on this ‘game’ for a while and don’t really want to subject my creaking old bones to steroids if I can avoid them, I’ve just taken time of work and basically rested up until I made some recovery.
He said that in my notes another neuro had said around four years ago that he’d suspected I was PPMS rather than RRMS.
He agreed that my walking is rubbish (I routinely use two crutches) but suspects this may be more of a confidence thing - when he took them away I froze, basically, my balance is shot and I was considering if I was about to lurch left, right or fall flat on my face. He did the reflexes thing - nearly kicked him in the face with my knee reflexes but hardly anything in my ankle, in my head I was following his push up push down with my legs instructions but apparently I wasn’t , my touch my nose and his finger was rubbish but not in the pattern he ‘would have expected’??!!
He said my ‘relapses’ were possibly just a steady deterioration with blips which can happen?
Anyway, he’s referred me to a neurophysiotherapist for further tests and hopefully to get over my ‘confidence thing’ with walking…and I therefore no longer fit the criteria for Fingolimod.
On a positive note he liked my skirt from Topshop…