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Pernicious Anaemia Society

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Excellent article.

Sukiwarrior profile image
4 Replies

Excellent article by some of our friends.

allaboutyou.com/health/issu...

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Sukiwarrior
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Poppet11 profile image
Poppet11

The articles I've seen now are getting too confusing and repetitive.

They don't distinguish between PA and b12 deficiency in respect of causation.

They indicate on the one hand that nerve damage can be devastating but go no further.

No specifics as to permanent nerve damage at all.

And then they focus on mood. Stage 1. What happened to all the other stages?

Sorry, same old, same old.

It just reads like someone had b12 deficiency picked up at stage 1, got it treated, symptoms were reversed - and now they know all about b12 deficiency.

I think articles like this trivialise a very serious condition.

Oh, and it looks like it's flogging stuff. How anyone on benefits could afford £13.75 for lozenges I don't know.

I'll explain the damage an article like this does:

I was talking to someone only this week who had read a similar article (I have no idea if it was this one) and they were basically 'explaining' to me that once a b12 deficiency is treated then all symptoms are reversed and anyway, it only affects your mood and personality.

I then had to take a very deep breath and explain that b12 deficiency when it affects your mood and gives you the fogs is only the first stage. That it then goes on to affect your nerves and muscles and brain, and, by showing her on the cord of an iron, how those nerves can be permanently damaged and result in permanent physical injury and no matter how much b12 some people took those nerves were never going to be repaired because they had died - and that this happens to one degree or another A LOT. Which is why you have people still complaining of pins and needles, balance problems, 'fibromyalgia,' etc. even after treatment.

I went on to explain that the people who wrote such articles got their deficiency picked up relatively early and so their fatigue or mood disorder was, relatively easily, reversed and that's why they focus on the mood bit. Because they don't understand the rest - and that's why they only occasionally throw the words 'dementia' or 'MS' in there.

All goes to show that such articles contribute toward the myth that b12 deficiency is a blood disorder which affects mood and is quickly and easily treated.

And do you want to know something interesting:

No one outside of the boards, has EVER asked me a question about b12 deficiency. Every single person that I've spoken to has TOLD me about my b12 deficiency. They know about it. They don't need to listen. I honestly cannot get a word in. They read stuff like this, cherry pick it, and make assumptions.

"Depression"

"Fatigue"

"Easily treated"

"Lozenges"

Tie that in with talking to a nurse or two and the job's a good 'un.

Some folk need to do a lot more listening and a lot less talking.

Poppet11 profile image
Poppet11 in reply to Poppet11

I'm just going to add:

Misinformation can, over the net, spread like wildfire.

I brought up another thread relating to encephalitis lethargica and Parkinsonianism in the book/film Awakenings.

I find the book fascinating and the observations by the patients and Oliver Sacks are well worth a read.

The focus is on how Dr Sacks treated patients with LDopa and how they had marvellous 'Awakenings' only for 'tribulations' or 'side effects' to set in later.

If you read the book you will see how Dr Sacks discusses in detail the problems in titrating doses - ie it couldn't be done. Patients who needed, for example, 3gms daily at first to produce the desired effect, later went on to find that 500mg was 'too much' and produced terrible side effects. In short the patients in many cases developed an amazing sensitivity to the drug.

Yet you go and read any article on the subject on the net - I even read a research article on the same - and they will tell you the patients built up a 'resistance' to LDopa. The implication being that no matter how much they gave the patients the desire effects could not be reproduced.

Yet this was not the case, the patients developed a 'sensitivity' to Ldopa. It didn't matter how much or how little they gave them the side-effects dominated.

But all over the internet you will find the misinformation that patients developed a resistance.

The article that you link to doesn't give misinformation per se, but it does mislead. Someone has got to start telling the full story about b12 deficiency and its long term, possibly permanent effects.

engels profile image
engels in reply to Poppet11

I totally agree with you. It's good to see that B12 deficiency is getting more exposure but far too many articles trivialise the condition and suggest that it can be fixed with a few sublinguals.

I spent far too long the other day looking at B12 information on the internet and it's astonishing how much nonsense and misinformation there is out there.

Poppet11 profile image
Poppet11 in reply to engels

From a personal perspective I read these articles and don't have much trouble understanding why my family think I'm barmy when I say I have permanent damage...

... and I spend far too much time looking as well!

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