Flipping Ek

Hope the Diet Goes Well, Happy Pancake Day (Shrove Tuesaday)

ProfG has been talking a flipping lot recently about getting on top of MS quickly.
So rather than start at the bottom and working your way to the top,
you go directly to the top and save your brain in the proceess (Flipping the pyramid).
It is not Rocket Science .

It seems that the UK Television Mad(wo)men have make an Ad campaign for him….involving a flipping Chameleon.
Is this the next evolutionary stage from a dinosaur?
Can neurologists change their mindset and not just their outward appearance?

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  • Wondering shall I change dmt with two mild clinical relapses last year as my mri was stable so apparently I’m still ok to stay on tecfidera … the thought of changing is quite scary so even tho i know i should probably change before a more disabling attack I’m thinking thinking… perhaps a lumbar puncture would help with prognostics…
    also waiting to hear back re my brain atrophy. Is brain atrophy something hard to evaluate from an mri? Who works this out? A Neuroradiologist?

  • “Can neurologists change their mindset and not just their outward appearance?”

    What do you think? How do you suggest patients – often in the Shires or further afield – can get their neuro to look at the information that caused you and Prof G (I daresay many others too) to change their mind?

    How does that get communicated to patients if the neuro is all funky and cutting edge like you lot 😉 ?



  • So if all you well informed, cutting edge, pyramid flipping Neuro’s had MS personally, which DMT would you start on? Seriously. Please share.

        • And what would you all do if you were diagnosed SPMS or PPMS and the NHS turned you down for both HSCT saying you have the “wrong type of MS”?

          Do you consider private HSCT in London? At least HSCT halts the advancing disability and will draw a line in the disability sand.

          Or would you go overseas to one one the two most experienced HSCT for AI doctors in the world?

          Or do you just wait for palliative care and an early death? 🤔

          • Take it on the chin. The HSCT trials in SPMS and PPMS suggest it does not work very well. In fact, some studies suggest it may leave you worse off. We really need new studies targeting early PPMS.

          • In reply to Mindy you suggest that she/they ‘Take it on the chin.’

            To invoke more behavioural science, it is well known that when the circumstances are reframed and that two people – say, for example, one with rapidly advancing disability from MS and the other a neurology researcher without MS but a substantial base of evidence to draw upon – the two people will view the risk profile quite differently.

            One has a dog in the fight, the other is merely observing the outcome. When they perceive no viable outcome the sunken cost fallacy is far less relevant to them. The less one has to lose the less risk averse they are.

            It is far easier to suggest they take it on the chin when it isn’t the ontological reality for the person making the remark. As I say to my neuro – you have to understand what it is like to be physically disabled in an ever-varying way on a day to day basis – before you understand the mental contortions it takes to ignore/adapt and just to get through the day sometimes. On top of fatigue, it can be pretty tiring.

          • The problem is I/we don’t control the service; we have to refer patients for HSCT. All cases are reviewed by a multi-disciplinary team. I know already, and with good reason, that if I had SPMS that my application would be rejected. Why? The evidence base in progressive MS is very poor and the mortality shoots up. In the European BMT register the mortality in SPMS is over 5%; yes, more than 1 in 20 HSCTers with progressive MS will die from the procedure, this should put it into perspective. To be honest the same applies to all our therapies, the more advanced your MS the less effective they are and the more likely you are to have complications. This is why it is so important to treat early and treat effectively and why I would seriously consider HSCT 1st-line.

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