What B12 Deficiency Really Does... - Pernicious Anaemi...

Pernicious Anaemia Society

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What B12 Deficiency Really Does...

Poppet11 profile image
7 Replies

This is a bit of a faff but on the link below scroll down to Engels link to the Blood Journal

healthunlocked.com/pasoc/po...

That goes to a film which was made in the 1920s. It is of the original B12 patients.

At the time it was believed that the anaemia caused the neurological damage - ie the physical injury.

The patients got treatment to reverse the problems with their blood - which was easily achieved and then they got EXTENSIVE treatment to reverse the neurological injury.

It was later realised that the anaemia did not cause the neurological damage. That it was in fact just one 'possible' symptom of the DNA dysfunction. Trouble is that message never seeped through to modern times.

Which is why today doctors still only give you enough medication to reverse the blood problems - they believe they are preventing the neuro damage.

They also believe that you can't get physically injured unless the blood damage turns into anaemia. They think (or thought) it works like this:

B12 deficiency - anaemia - neurological damage.

When in fact it works like this:

B12 deficiency - DNA dysfunction - neurological damage - (possible anaemia)

So, they are waiting for the anaemia before they consider the neuro damage may be as a result of the B12 deficiency - except, for many people, the anaemia never appears in blood test results. Hence, many many people get their neuro symptoms dismissed or diagnosed as something else. Even if they do get a B12 deficiency diagnosed, doctors will still only reverse the blood levels and then declare the B12 deficiency has nothing to do with neuro damage.

Now the symptoms these patients are showing are not symptoms of anaemia. Only some people, for some strange reason, think they are.

These people suffered cellular damage - and even Murphy and Minot knew it took intensive treatment to reverse this.

Yet today people are expected to get this kind of damage reversed simply by having a few B12 injections. It is not possible. It never has been possible.

So, if you have fatigue, see how bad things can really get before you go around wondering 'why' some people don't get better on one jab every three months. Or accusing people of 'imagining' symptoms or suffering from some kind of 'hysteria.'

And if you've got less severe nerve damage, take a good look at what it can develop into if you don't get the correct treatment.

And if you can't be bothered to watch it - then you're not that ill.

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Poppet11 profile image
Poppet11

... and I'd just like to make a point.

If you ended up like one of these people - and to hear some folk talk they were absolutely on their last legs - why on earth would you start talking about 'why' you needed a jab more than every three months? Why it didn't work for you? Isn't it blatantly clear as to 'why' when people have damage such as this that they need intensive treatment?

It takes months and years to put somebody right whose had severe neuro damage from B12 deficiency - and it can never be put right in totalilty.

Many of you know that even lesser neuro damage cannot be put right - you have your B12 injections but those symptoms are either still lingering or they bounce back up as soon as your levels run low - your nerves and cells are damaged.

But if you had gone as far down the road as the people in the film, wouldn't you be talking about how much B12 it took to put you right, what rehabilitation you got, what tests were done and how the damage was identified and isolated? Wouldn't you be telling people how great they were at X hospital or the neuros at Y hospital were wonderful?

Or would you pootle off and sort it out yourself ...

Know what this illness is capable of. Know if you are suffering from fatigue it is just the start. Know what neuro damage can be done. Know how long it takes to get well even with extensive treatment and nursing.

helvella profile image
helvella

"Know what this illness is capable of."

My partner's grandfather had "Pernicious Anaemia" cited as a cause on his death certificate. That was only back around 1986.

Our reaction to finding that (fairly recently) was to question why his treatment was not adequate. No-one around to find anything out from now so we will never properly understand.

Poppet11 profile image
Poppet11 in reply to helvella

I can't believe that. Not that I don't believe you...

But this is what's been happening.

They took the piece from Murphy and Minot's work that treating the blood was quick and easy. Then they held on to the belief that the anaemia was the cause of the neurological problems.

So, treat the blood and the B12 deficiency is sorted.

The second the bloods are normal they consider the B12 deficiency all done and dusted. That's why doctors treat you in the way they do.

So, even with someone like your grandfather they would simply bring his b12 levels up into the normal range and then stand back and wonder what is still wrong with him.

This is why we have myriad illnesses of unknown cause today - because even if doctors do think to check B12 levels they will only bring the range back into normal.

If you consider that Murphy and Minot could, with a liver diet, get reticulocyte counts back to normal in a few days, you can see how easily this is resolved.

But Murphy and Minot also knew to treat the neuro problems intensively. Our doctors laugh in our faces.

Is that the black and white movie of people with PA in hospital? I remember seeing that video years ago (I can not get anything with the link suggested), I was like that at a certain stage, get out of bed and just sink trough my legs, very weak. But increasing my B12 injections and addressing a folate def sorted that.

Poppet11 profile image
Poppet11 in reply to

Most of your injuries sound as if they were still at the early reversible stage, Marre - but you still have problems with your ankle? That was through them undertreating you though.

It does say in the video that the injuries are only reverisble if they are caught early and treated promptly. I think most of those in the film had hospitalisation for between 3 months and 2 years and intensive treatment and physiotherapy.

Lindylanka profile image
Lindylanka

I wish I could see this. I am trying to access it on an iPad too.

Poppet11 profile image
Poppet11 in reply to Lindylanka

I wish people could see it more easily too!

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