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Very Weird One

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…

Sounds like he is trying to save the funding pot by fobbing you off and stopping you getting Fingolimod. There is NO way on God’s earth you would have been prescribed Mitox of all things if there had ever been any doubt about you being RRMS in the past. That stuff can be very toxic although super brilliant at stabilising back to back relapses.

Can you get a second opinion even if means going private? If you are RRMS rather than PPMS you can’t run the risk of being shut out of being given DMDs as appropriate. And you have had a definite history of relapses if my memory serves me right. This just doesn’t sound right at all.

How worrying and frustrasting for you. Nothing worse than not feeling sure you can trust your neuro. So much depends on their judgement.

Hugs,

B

It’s all very queer and I don’t know what to make of it at all, I don’t actually believe that I have been misdiagnosed and treated for the last 10 years with drugs that did appear to work at the time.

I think I’ll wait and see if the neurophysiotherapist can shed any light on this bombshell before seeking a second opinion, I’m just befuddled and confused…

BTW, he did say I wouldn’t get the funding for Fingolimod given my current symptoms and presentation, weakness and wobblyness no actual sign of ‘relapse’…

Seeing what the neurophysio says is a good idea. I have found mine to be very, very knowledgeable. In some ways more so than the neuros and the big advantage is that you have more time with them so they get a clearer picture of what your body is really doing.

I don’t understand what he means though about you not getting Fingolimod because you aren’t in a relapse at the moment though. They aren’t steroids! You take them to prevent a relapse not fix one. Just having a Dx of RRMS and having had 2 clinical relapses in the past 2 years is reason enough to be offered them. And until yesterday you WERE RRMS until he decided otherwise. He sounds a bit odd in some of his ideas to me

Let us know how it goes and try not to fret too much in the meantime.

B xxxx

Sorry I’m chuckling so much at the idea of him being a schoolboy. Who is it? ? I’mat Walton so just nosey lol. Neuroohysio sounds a good idea A

I will pm you Arwen - don’t want to risk litigation on a public forum !!!

However, I AM of the age where policepeople look as if they’re only just commencing 11+ revision…