Absolutely pig-sick of the trivialising of the injuries which can be caused by b12 deficiency - and it stems from ignorance and denial.
My lashing-out is in response to an email I received last night, where, yet again, the writer completely either misunderstood the metabolic pathways or completely ignored them because they were too busy looking to throw out the same old garbage relating to previous studies based on the same misconceptions that the serum b12 is reliable and that anaemia presents primarily. A grim determination to prove that patients' symptoms are initially related to anaemia and only anaemia and that the blood levels were supportive evidence of this.
What is it with some people who have to go around trying to prove to patients that they are not ill? Denial, vanity, stupidity. apathy, laziness? A fear that patients will sue their backsides off? Because what they don't seem to recognise is the fact that most patients don't want to sue - most patients simply want competent medical care. Which is exactly the same as every other patient who is recognised as being ill, gets. That's it. End of story.
Absolutely no one should have the influence to insist patients are not ill when patients are reporting, and in many cases proving, that they are. No one should have the right to deny those patients the access to correct care and the opportunity to improve their health as much as possible, by throwing selective studies founded on unreliable blood tests back as evidence whilst ignoring the biochemistry which contradicts those studies. No one should be having treatment founded on guidelines which in themselves have no research to support their effectiveness in halting the illness progression never mind reversing the neurological damage.
Do these same people think this illness will not or is not, impacting on them? Do they think it is selective? Because if they cannot appreciate what is happening or how to put it right, then essentially their behaviour means they are shooting themselves in the foot!
Anyway, in light of the BMJ article some patient and medical reference information is going to be brought forward and reviewed. When they do it and if they change it, and to what extent, remains to be seen.
... and just to add: if I have to see the title 'B12 deficiency anaemia' one more time my head is going to blow off. Until they start having an individual illness described as 'B12 deficiency neurological damage' then I think the 'anaemia' bit should bite the dust!
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Poppet11
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I have PA and have had for years. My mother had what the doctors "thought" was MS, although it was never definitely diagnosed. But she never had a test for B12 deficiency. She spent 10 years in a wheelchair and then the last 15 years bedbound. We now think there is a strong possibility it was PA. The damage it can wreak is catastrophic but the general medical view is totally inadequate and ill-informed and I cant for the life of me figure out why!!!!?? So you have my support and understanding, without a doubt.
There are, I understand, many more 'Atypical' cases of MS than there are of typical MS.
What I would like to know is, how can you be an MS specialist if you don't know what b12 deficiency does? They both do more or less the same thing. You can't diagnose one without ruling out the other. And you can't rule out the other unless you understand the diagnostic flaws.
The only time I've seen MS 'experts' and not simply the patients with MS, respond, they came trotting back with the same old, same old about anaemia and the serum b12 test. So they haven't got a clue.
And another thing I was thinking - because we are told that the most common presentation of b12 deficiency is with patients who have anaemia and fatigue - that's the most commonly reported initial presentation. Well, it will be, won't it? If you think about it, a patient who isn't taking folate or hasn't got an iron deficiency, with get dysfunction along that metabolic pathway and the blood will be affected and the anaemia will show. They get picked up quickly. Therefore the neurosymptoms will be in the relatively early stages and therefore reversed with treatment.
We are then told that patients who 'don't have anaemia and who have severe neurological damage are relatively rare. They are - or they don't get picked up? If you have got neuro symptoms but no anaemia because you have an iron deficiency. You are less likely to have a test for b12 or iron deficiency because you 'don't have anaemia.' Not in the haematological sense. That neuro damage is running wild by the time someone bothers, if ever, to do a b12 test and then they declare you treated (no matter what the physical damage) because they give the treatment they gave to the first lot of patients worked for them so obviously it should work for you - and you are a neurotic hysteric if it doesn't!!!!
Therefore you don't even get recorded as being one of those in the 'rare' group- you just get an alternative diagnosis or tarred as being emotionally disturbed in some way.
There's a big difference between a condition being rare and it being rarely diagnosed but, of course, if doctors believe that a condition is rare and the patient doesn't fit the classic profile they don't diagnose it so the statistics become a self-fulfilling prophecy and we're stuck in a vicious circle.
Spot on, Engels. How many of us here have produced indicators of spinal cord damage and have not got that damage acknowledged? Most of us, I would guess. Marre, has. She's the only one I can think of. Yet we are going to neuros, producing the indicators and getting the brush off.
You are actually more likely to achieve a diagnosis if you have produced signs of anaemia and that damage is less. Not that even many of us achieve that great end because they still tell patients their symptoms are in the mind after reversing b12 levels with their pathetic protocol.
Ah yes, it's all in the mind. When I went back to my GP and said that 3 monthly injections just weren't working, all he was interested in was discussing alternative treatments for my "depression".
I was told by my GP, "There is an epidemic of people with emotional problems."
My response, "No. There is an epidemic of sick people - you just won't acknowledge they are ill."
I don't think the 3 monthly jabs work for anyone. I don't think they hold the DNA dysfunction at bay - even if some people 'think' they are working for them, it's simply because they don't recognise further degeneration as being as a result of b12 deficiency which is being undertreated. I think the illness progresses more slowly, that's all.
Marre here, is a case in point. She was diagnosed, given 3 monthly jabs and over the next 5 years her neuro degeneration progressed. More slowly perhaps, but it progressed. And they she got her diagnosis of subacute. What did they generously do then - increase her jab frequency to once every 2 months. She still has to self medicate to hold the symptoms off.
And Marre was lucky. Most people would be on the antidepressants before they could spit and be told everyone does fine on the 3 monthlies.
My gastroenterologist wished me luck with my depression after diagnosing "unspecified B12 malabsorption". No suggestion of more frequent injections. My neuro symptoms - lack of concentration, pins and needles in my hands, strange sensations in my feet and slight loss of balance - were dismissed as unrelated by my GP.
At the time I presumed these "experts" knew what they were talking about but once I started doing my own research I soon realised they didn't have a clue.
I think that is the most disturbing part about all this. You put your life in their hands and they haven't got a clue.
And how many are they missing and have missed?
I'm certain that most doctors if they knew what they were getting wrong, would put it right. But I still find it unforgiveable that there are so many sick people going to them that they are simply not recognising are sick purely because a few blood tests say so.
Every other symptom aside, I remember when I was undiagnosed asking again and again for an iron test. I was refused over and over because I 'didn't have anaemia.' Yet my skin was completely white - and my normal shade is 'sallow.' The blood tests, which I can now prove are unreliable, were taken as the 'truth' yet the obvious was staring them right in the face.
I've just looked up about nails. The half moon is called the Lunula. If it is absent it is an indication of anaemia. How many of us don't have haematological signs of anaemia but are as white as sheets and don't have half moons.
It's also unforgivable that they ignore patients who tell them that the standard 3 monthly injection regime doesn't work.
Have you seen the latest case on Martyn Hooper's blog? An 80 year old man diagnosed with PA but refused injections by his GP because of his age. It's criminal.
... and I was just shuffling through my medical notes and, to be quite honest, I have never read such a load of unmitigated .... in all my life.
It's an abomination. Little or nothing about the b12 deficiency apart from my apparent obsession with it, or more precisely lack of it, causing my neuro damage.
Hardly any details correct thoughout, important details absent, and no specifics about the b12 deficiency whatsoever.
I don't know about me being obsessed with b12 deficiency, I think my doctor is obesessed about people having emotional disorders.
It's ignorance from start to finish. Absolute and utter ignorance.
You go to these people in good faith and they trash you because they don't know what they are talking about.
Last week my B12 prescription was withdrawn again for the 3rd time by one of the doctors at my surgery (I’ve never even discussed my B12 with this particular doctor as he refused).
So on Monday I went back to the doctor who told me I should be having the jabs every 2 months. She agreed this because of the neurological symptoms I suffer from (dizzy, numb hands, feet and face etc.).
She has now back tracked and told me that my symptoms are imagined and stated that the other doctor is correct. She refused to even talk to me. I left her with the new PA society treatment bulletin leaflet.
However, she told me that she knows everything she needs to about B12 and that she will not read it!
She then told me that I am at risk of over dosing on B12 if I have the injection. I reminded her that you cannot over dose on it as B12 water soluble.
She basically told me to go away.
I am now in the process of changing GP surgeries.
At the moment I feel dizzy and my feet are numb. I hope she's right about me having a vivid imagination and it's nothing more sinister......
Ignorance and denial is one way of describing the behaviour of some medical professionals. I left my appointment before I was at risk of describing the doctor's behaviour in a more explicit way and less polite way.
I would not trust the GPs at my current doctor’s surgery to push trolleys round a supermarket car park. And yet these so called medical professionals have the power to make decisions about people's health including mine!
I'm so sorry they stopped it. It's absolutely ridiculous. If you want us to help getting put stuff on your medical record showing your GP is liable if you are injured, we can. If you want to just try the new GP and see how it goes there, I wouldn't blame you...
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