Latest research by MS society on myel... - Pernicious Anaemi...

Pernicious Anaemia Society

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Latest research by MS society on myelin repair

Gambit62Administrator•

4 years ago•9 Replies

whilst not strictly PA related I thought this might be of interest to those with neurological issues

mssociety.org.uk/research/l...

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Gambit62

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4 years ago

That is fantastic Gambit 62. I am currently involved with a neurologist who has diagnosed peripheral neuropathy in my feet, lower legs and hands. This has been confirmed by EMG as being in the sensor rather than the motor nerves

During early consultation she asked what pattern my problems were and how I dealt with them so I told her exactly and when she asked what I was hoping would be the result of our meeting I said I hoped she would support the frequent injection routine I found so effective.

She has doubted that what I see as the result is actually so and thinks it could be a placebo effect. She recognised many people are doing this but doesn’t see how it can work as she does not know of a route by which it can work. We are all imagining things - cheeky bitch.

I think this should be stuffed under her nose.

My comment has been just because she doesn’t know of a route doesn’t mean there isn’t one. If a large cohort of sufferers get relief from frequent injection then there must be a mechanism. Sadly, unless there is a paper published by some research body she accepts then it doesn’t exist. I find such closed mind lack of curiosity to be reprehensible in people such as her. Were I responsible she would find herself looking for another post, perhaps pushing a broom.

This isn’t the first time I have encountered such blinkered thinking on medical consultants. Last time I found one with an enquiring mind, one who hadn’t been fired. I will just have to keep looking.

fbirder in reply to 4 years ago

So what if it is the placebo effect. If it works, who cares?

in reply to fbirder4 years ago

Sorry to say this fbirder for all of your posts I have agreed with but we who need frequent injections should care and let the under educated doctors we are dealing with know it. We know it works, we know it isn’t just a whim. It is real and they cannot dismiss us with the dreaded placebo word.

At the moment they, the GP’s control our lives. If we have peripheral neuropathy and need frequent injections to control the pain and discomfort then we need them to be with us, not sitting smug and refusing us the medication which costs peanuts. If they can say ‘it’s a placebo’ and dismiss us as wimpish hypochondriacs with over active imaginations then we are not going to get our or future generations the medication needed by some.

I am actually quite lucky in this as I have excellent close ties with a German family who will happily source the ampoules for me and either bring them with them on regular visits or retain the for when one of us goes there. The casting off from the mainland of our island will not affect this for me, but if you haven’t got such close relationships you can’t say the same. What are you going to do then when the little Englanders refuse to allow your ‘placebo juice’ across the sacred borders. It will still be ‘prescription only’ and you will not have the backing of the OTC status of it in German.

It works and I care and so should everyone of us who suffers from it. We need our injections and we need the medical profession to recognise that.

It is NOT A PLACEBO

fbirder in reply to 4 years ago

Did I say it was?

No.

You can apologise any time.

Gambit62Administrator in reply to 4 years ago

kcbrecks - I think the point fbirder intended to make was that it should not matter to a GP if something is the result of the placebo effect or not - as long as it delivers the result that the patient needs

in reply to Gambit624 years ago

That’s as maybe Gambit62 but so long as there is the idea is it a placebo there Is no way it will be taken seriously Placebo implies it is all in the mind so if you don’t use it you will get over it. So prove it, stop your frequent self injections, just have three monthly ones, see how long you can put up with that of it is three months then it is a placebo. But you and all of us know we cannot do that. This is why I am so vehement we cannot allow for one moment the channel captains of our vital medication to think we don’t need more than the tiny amount they grudgingly prescribe

Gambit62Administrator in reply to 4 years ago

Actually the placebo effect is a very real thing. It speaks to the power of the mind in all of this because even when people know that something is a placebo it can still have an effect - the nocebo effect. It is unfortunate that the placebo affect has got the reputation it has for being a way of dismissing things because scientifically and medically it is much more important than that.

B12 fails the test for placebo as the definition of a placebo is a substance that could not possibly have any effect/the effect that is being claimed - such as a sugar tablet rather than a painkiller, or plain water rather than a medication. However, the fact that B12 does affect a number of cellular processes that are involved in the symptoms being reported means it doesn't fall into this category.

in reply to Gambit624 years ago

Precisely so the word cannot be accepted in any context with our problem. The moment it is we are doomed as cranks using witchcraft. We cannot even countenance anyone thinking it, particularly those we have to deal with in the NHS.

Gambit62Administrator in reply to 4 years ago

I don't really agree with you.

I think GPs should not be using the term the way they are - it just shows their ignorance of the meaning of the term and its importance.

I don't think anyone should use a word without understanding what it means and I definitely don't think that a word should ever be blamed/used as an excuse.

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