How doctors are killing you

[Chancery]

Not intentionally, of course (we hope!). I just read the very interesting thread by Helvella talking about the close relationship between thyroid and B12 deficiencies healthunlocked.com/pasoc/po... , and how docs seem to miss these related conditions (and the bigger autoimmune picture), and I just wanted to share how I discovered this, painstakingly, for myself and to recommend you never just accept a bad diagnosis as an irrevocable situation, or even a definitive truth – something that is particularly important with any condition that has the possibility of neurological damage attached to it, because there is no back door from that once it sets in. It's not the doctor's brain which is being irretrievably fried; it's yours.

My journey through the autoimmune minefield has been done backwards. Dr Alessio Fasano, the Coeliac specialist, says that Coeliac disease can present first as a neurological condition, long before it shows up - if it ever does - as a gut problem. I believe my illness is a case in point, but not just of Coeliac disease.

When I was diagnosed with Trigeminal Neuralgia I was completely baffled as to how I could have been struck down with it. The only illnesses I'd ever had were gallstones and oesophagitis, although I hadn't been diagnosed with them separately (it was assumed it was just gallstones), not exactly brain or nerve problems.

I can't even remember how I came across the B12 connection now, I think it was TN sufferers discussing taking the vitamin as a supplement and, interested in the possibilities of the relationship they were discussing, I discovered the book, "Could It Be B12?" on Amazon, just through browsing. When I got it and read it I was struck by how many of my symptoms fit B12 deficiency, although there were plenty that didn't. But, interestingly, it was the neurological complaints that fit best: apathy, loss of cognitive abilities, depression. When I came across ONE mention of TN – a rare condition – that was enough for me. I wanted testing. And the tests were 'negative', I was well within NHS guidelines for a healthy person. But, crucially, I wasn't within B12 experts' guidelines.

I did get treatment, eventually, after much fighting, and lo and behold, two months into treatment, the TN went into remission. A 'miraculous' recovery, which my doctor still believes is some kind of bizarre placebo. That's a bit like suggesting you could cure cystic fibrosis by placebo. His belief is far more irrational than my TN being 'cured' by B12.

This got me wondering what had made me B12 deficient. Well, there were a lot of possible reasons, a very low calorie diet with little meat and no dairy for a year and a half, no fats eaten at all during that time, an operation with nitrous oxide, veganism and vegetarianism after the op, but it niggled away at me; it seemed too severe a reaction, given that I was eating SOME dairy, fish and chicken, so I started to look at other possible connections, despite my doctor thinking I was psychologically "damaging" myself to do it.

I tested, and retested, for coeliac – nothing. Finally, recently, I asked for a thyroid test. He eventually gave it to me, again not without an argument and only humouring me, and lo and behold, completely unexpectedly, another piece of the puzzle fell into place: I am subclinical hypothyroid, and, I suspect, have been for many years.

Low thyroid often goes hand-in-hand with low stomach acid, which causes malabsorption, so having no parietal cell antibodies, (which originally led my doc to dismiss my theory that my parietal cells were causing the problem), is pretty much irrelevant and malabsorption could very well be the issue. High cholesterol, another feature of thyroid problems, also explains why I had gallstones, and low stomach acid could explain why I have osesophagitis.

My point is they are all related. There IS a pattern there, despite the fact the doctor pooh-poohed me saying I felt that the whole thing was a degeneration, from my gallstones on. I said that I felt my gallstones had somehow led to my TN, and now it looks like that might well be the case. Not that the gallstones CAUSED the TN, but rather it was a degenerative progression of an unseen illness that is, as yet, still unchecked. I feel ALL of this is autoimmune, and is part of a bigger picture that I may well never be able to see let alone 'fix'.

My TN is considered to be permanent, incurable, as periods of remission are normal, and it will come back again, worse and harder to treat than it was before. But one thing is for sure, without the course of tests I asked for, without my badgering him and all the arguments and tears, I'd still be sitting on the sofa in a stupor of drugs, barely able to function. Other things that are wrong with me would have gone undiscovered until they made too much trouble, by which time they may well have done similar unfixable damage.

It's NOT a coincidence that B12 deficiency, Thyroid disorders and neurological conditions like TN cross over, but there COULD be something bigger, something – I'm guessing – inflammatory behind them all. To go all Lord of the Rings here, a ring to bind them all. Unfortunately it's like looking for a needle in a haystack, as I can testify, full of dead ends, as I can also testify, and definitely not aided by docs who actively do NOT want to engage in the process, or use any imagination in theorising what that bigger picture might be.

Western medicine is afflicted by separatism, one specialist for this, one for that, and they do NOT communicate. That is how my doc can say to me, with a perfectly straight face, "I don't know anything about teeth, my knowledge stops at the jaw" and my neurologist can say "No, you'd need to see a gastroenterologist for that" flatly and finally, when I ask him if he knows of any conditions that might link B12 to TN. There is no integrative medicine, no knowledge of nutrition, despite huge advances in this field showing that the gut microbiome is playing a not so silent role in everything from chronic disease to obesity – a man really is what he eats, in more ways than we can imagine. Until then we will just have to research, and research some more, bundling our diseases together ourselves while trying to tease out the tenuous strands between them as best we can.

[Poppet11]

One thing that rarely gets mentioned about B12 deficiency - yet you see it every day - is the tendency toward dyslexia.

No matter who posts, and we all do it, we get our words wrong. No matter how good at writing we were before we all suffer from it.

No one says much because it's a bit like being the grammar police, and, let's face facts, as individuals we never know how good/bad someone was before they became ill.

And, before you can say 'spellchecker' I'm talking about homophones too. The words like their/there which the spellchecker doesn't pick up. Oh and punctuation.

It's something that always makes me smile, because we see it in all our posts - it's like the elephant in the room.

Very well written Chancery, not one mistake.

Well done.

[Poppet11 in reply to Poppet11]

Look, I have to make this point because I know others will read it: This bit "But, interestingly, it was the neurological complaints that fit best: apathy, loss of cognitive abilities, depression"

Those symptoms are not neurological symptoms - they are psychiatric. Whether founded in situational problems or chemical imbalances or whatever.

Neurologists do not deal with emotional problems, they deal with physical problems where the nervous system has been damaged in some way.

So, you get a deep cut for instance, and the nerves are damaged. This affects physical function. It may be they are repairable or maybe not.

If the spinal cord is damaged then those physical symptoms are permanent - which is why people end up in wheelchairs.

It is also why in the BMJ article they state that 6% of people who have had B12 deficiency overlooked suffer from 'residual disability' - not that their brains have been affected but that they have physical disabilities resulting from nerve damage.

So B12 deficiency is known as neuropsychiatric - in that it can cause neurological (physical) damage or psychiatric (mental health problems) or a combination of both.

I appreciate the way that you have written but we must get the facts straight first. Misinterpreting the basics is why people like me are accused of misrepresentation or malingering, simply because the basics are not understood.

Neurological = physical

Psychiatric = mental

[Poppet11 in reply to Poppet11]

In fact I think I can get my point across clearly to anybody reading this - not that I agree 100% with this or any other website relating to B12 deficiency at the moment - but this is what happens to muscles when nerves don't work. This is not related to depression, cognitive abilities or apathy - This is what neurological damage is.

b12d.org/gruesome-facts

[Galixie in reply to Poppet11]

Cognitive impairment is definitely neurological in nature. When I mentioned to my doctor that, during a B12 crash, I had suddenly forgotten how to turn on the dryer (despite there being a button on the machine with the word 'start' over it) it lead her to refer me to a neurologist to have an MRI. Even the neurologist seemed to find my story alarming (although not as alarming as I found it at the time, I'm sure). My brain really doesn't function as effectively without enough B12. That loss of ability may be hard to measure, but that doesn't make the problem psychiatric.

[Poppet11 in reply to Galixie]

It doesn't make it nerve damage either.

Cognitive can be cellular, it can result from chemical imbalance, but it has psychiatric effects - as in effects on the mind.

What happened to apathy and depression? Are you going to tell me they sent you to a neurologist for that?

Let's face facts, as is becoming most apparent, most people think neurological relates to nerves as in some kind of nervous emotion - be it relating to thinking, or apathy, or depression.

What I want to know are comments on nerve damage. The physical stuff.

Because I've got this nasty feeling that I've just spent 4 years on a forum where people don't even understand the basics and think neurological damage is related to the mind rather than physical damage...

[Galixie in reply to Poppet11]

Let's back up a little. I'm not the original poster, I am merely stating that cognitive impairment is neurological. I don't know whether apathy or depression share any of the same physical effects on the brain as those that occur with cognitive impairment. I am limiting my comments to what I have experience with.

Further, you have already painstakingly researched for yourself the connection between B12 deficiency and neurologic damage. Why do you believe that damage done to myelin on nerves in other parts of the body is more 'physical' than damage done to myelin in the brain?

[Hillwoman in reply to Galixie]

Quite. Think of the cognitive defects often seen in other demyelinating conditions, like MS.

[Poppet11 in reply to Galixie]

I am definitely interested in your experience - because you said your neurologist was surprised by it.

I am I right in presuming your MRI showed demyelination in your brain - and may I ask what treatment your neurologist gave you?

[Galixie in reply to Poppet11]

The reaction was more concerned than surprised. That type of symptom can indicate MS. That's why I was referred to a neurologist. All I know is that I don't have MS (thank god!). The only treatment I've needed is B12.

For me, cognitive impairment is a noticeable symptom that recurs when my B12 level gets too low. It is not the only symptom that crops up, but it is just as much a physical symptom as pins and needles are. As you might imagine it is actually a slightly insidious symptom, because the more deficient I become, the less likely I am to realize what is happening. I pray that the damage that occurs during those episodes doesn't become permanent. So far I have been able to bounce back reasonably well.

[Poppet11 in reply to Galixie]

I keep losing my server...

There are lots of problems here. Firstly If you don't get B12 deficiency treated it ends up exactly the same as MS.

I'm always really surprised to hear people be relieved to 'only' have a B12 deficiency. You only have to look at the above photo to see what happens there (this man died a couple of days later I believe) And there are many people out there that never get their B12 tested.

The plus side, which is where you are coming from, is that if it gets picked up early enough B12 deficiency is reversible in 94% of cases - then the treatment is supposed to keep the symptoms as bay. For many it clearly is not enough.

However then we have the 6% who don't get it picked up early enough. If we separate B12 deficiency into an illness which can produce neurological and/or psychiatric symptoms (we know it causes demyelination/cell death etc in the brain, but it can have clearly different effects on different people to different degrees) then we can see the difference more clearly.

For the 6% who suffer neurological damage they end up with permanent physical symptoms.

Some symptoms, those relating to peripheral neuropathy, are usually still reversible if the correct action is taken ie physio etc but even that takes up to 2 years. The permanent injuries are due to neuronal death which means the signals are not sent to muscles and those muscles eventually just atrophy. That, in respect of B12 deficiency, is neurological damage.

Now the psychological symptoms - I don't think anybody really knows the true state of play regarding permanent damage. We know that it is considered that at least 5% of dementia cases would have been reversible had they been given the right treatment at the right time. Most aren't.

However the bottom line in this relative to the OPs post, is that she indicates she believes that cognition/depression/apathy are the neurological symptoms and in this context they are not.

Which is why most people confuse neurological damage with psychiatric effects.

So, if I say to someone I have permanent neurological damage resulting from B12 deficiency - what do they think?

[Poppet11 in reply to Poppet11]

...and I'm going to give a stab at the interesting information bit - without looking at the research paper because I don't know where it is at the minute.

That man in the photo was a labourer. He had the usual pins and needles stuff and started noticing he was getting weaker. He went to the doctor when he started losing his balance and getting numb areas. He was identified as having sub acute (in those days this was assessed by physical examination) and from that point on I think it took him 9 months to die.

Some deaths from the same study were attributed to heart failure, others directly to sub acute. Most did not enter the hospital with anaemia.

So, once things start getting bad and you don't get any B12 (remember this was all before they discovered the treatment) I think the maximum time before death is about 15 months. Some died within weeks.

What we know today is that:

a) Many people don't get B12 levels checked (remember how far Dave Carr got before he was sent to another hospital which actually tested him)

b) Many people have their symptoms attributed to be being 'cognitive' In this context of cognitive read 'all in the mind'.

c) Many people aren't getting enough B12 to keep the physical symptoms at bay (even Murphy and Minot knew patients had to be treated according to their individual needs)

d) Even if you have got neurological ie muscular injury it is a) dismissed or b) attributed to another, usually 'unknown' cause.

Bottom line is - exclusive of the people who have mental health issues ranging from pschosis to manic depression - people today are still dying like the man in the photo - but of unknown cause and probably spread between myriad illnesses.

Even on the BMJ CSE page a doctor said after taking the course 'we are undertreating neurological damage'.

[Galixie in reply to Poppet11]

Maybe it's a sign that my cognitive impairment has become permanent, but I don't grasp what the problem is.

Both cognitive impairment and peripheral neuropathy are neurological in nature and are physical signs of damage. Both are treatable with B12. Damage from both can become permanent if left untreated.

As for what a person thinks of when you say 'neurological damage', I would expect it would depend on what their experiences include. If they've known someone who had MS or Alzheimer's, they may think of cognitive impairment first. If they've known someone who was in a horrible accident, they may think of damage to the peripheral nerves first. It would be up to you to explain what type of damage you're referring to, because both examples are legitimate uses of the phrase.

Personally I tend to be in the camp that thinks of both, partly because I had a good friend who was in a motorcycle accident that resulted in both permanent cognitive impairment and the permanent loss of the use of one arm.

[Poppet11 in reply to Galixie]

Right. So cognitive you think is not related to psychiatric at all?

[Poppet11 in reply to Poppet11]

You see even in the world of medicine there is no clarity in the use of the word 'cognitive.'

Our cognitive functions can be impaired - as you quite rightly say like someone who has been in an accident and suffered brain damage.

In the world of B12 deficiency 'cognitive' means it requires a behavioural therapist -I believe the term is 'of no structural cause.' It is seen to be a psychiatric issue. They also term it a 'functional' disorder.

It isn't, of course, the brain is clearly affected in many different ways.

So, if you have cognitive impairment due to an accident or maybe a stroke, it is seen to be a physical issue. With B12 deficiency, when, of course, your levels are returned to normal - you are seen to have mental health issues.

[Poppet11 in reply to Poppet11]

Actually - this is silly.

With regard to B12 deficiency there are neurological symptoms which refer to physical damage and psychological symptoms which refer to mental problems.

We can have one or the other or a combination of the two.

Cognitive impairment affects the brain and mental function, so that would come under the psychiatric element.

[Chancery in reply to Poppet11]

Hi Poppet. Unfortunately, it's not possible to be sure you are looking at psychiatric rather than neurological UNLESS you know for certain the person has had no other ill-health at the time, and even then I wouldn't put money on it. People can come into contact with viruses and 'suddenly' go mad. That is a viral disease leading to brain damage/derangement, not a psychiatric condition caused by emotional or mental distress.

In my case, as is the case with most people on here, all our cognitive problems are neurological in effect/origin. This is for the simple reason that B12 deficiency (and other physical conditions) are causing physical damage to our brains. Yes, it's absolutely possible that some B12 sufferers have psychiatric problems - why not, after all? - but if I knew someone had a B12 deficiency, or any other disease that caused or was connected with demyelination, or that was known to attack the brain through inflammation or any other destructive process, then I would consider it neurological until proven otherwise. That is why TN sufferers see neurologists, not psychiatrists. I have TN because something has demyelinated my trigeminal nerve, not because my mother was cruel to me.

The brain is, essentially, a mass of nerves. Anything that goes wrong in there will, inevitably, impact on the nervous system, even if it is well contained to a localised area, therefore anything that damages the brain can show up anywhere in the body: your tingly leg, your twitchy arm or your hyper-excitable behaviour with tearful outbursts.

You can see a first-hand account of how neurological damage through a virus can present itself purely as 'madness' in the book "Brain on Fire" by Susannah Cahalan. I would recommend it heartily. The author ONLY had mental symptoms (although I think she may have been a bit flu-ey beforehand). She developed paranoia, delusions, schizophrenia and worse, all because of a probable viral infection. Eventually, through the help of a doctor who was more dedicated, they did a brain biopsy and did manage to track down markers for an infection. In other words, it was mechanical, an organism, destroying brain tissue, which led to extreme behavioural problems.

If nerves were separate from the brain then we could disown them, and cognitive damage wouldn't be neurological, but they're not. Information goes to and fro all the time. Ipso facto, if your brain no longer does what it should do then there is cognitive damage, and depression and apathy can be part of that, just like being hyper can be part of it.

I get a unique perspective on cognitive impairment because I'm on medication that impairs it. I can't finish a sentence if I'm interrupted. If I think of something else whilst in the middle of doing something then I can't remember what I'm doing, even if I'm standing in the middle of the activity. I can't remember everyday words. I have to make up words like Ab Fab's "wheat powder" for flour because I have zero idea what the real word is and no amount of prompting myself dislodges it. Words are no longer on the tip of my tongue; they're just gone

When I was first on the drugs, I hallucinated, badly. I saw spiders everywhere and had to get up and dust down sofas repeatedly, checking under things, behind things. I started seeing my brain in coloured halves; thinking I was unnaturally tall every time I stood up, and all of this, ALL of it, was simply caused by calcium channel blocking drugs that stopped nerve impulses moving at their usual speed. It literally calmed neurological impulses in my brain so that the damaged nerves in my head wouldn't fire off incorrectly. They still did, but now they weren't giving me electric shocks. Instead they made me think I had super-sensitive teeth. I didn't. It was all fakery, chemistry cheating nerves that were already making mistakes of their own. And none of it was psychiatric, although it was very real.

We now know that many, many poor souls were put into psychiatric hospitals who shouldn't have been there. B12 deficient patients among them. People die of Alzheimer's, an entirely neurological disease that destroys your brain, but, importantly, ends up killing your body in the process. It's neurology, not psychiatry. And who's to say that as the years go by more and more supposedly psychiatric complaints aren't going to be found to have a biochemical origin.

Making division between apathy, depression and cognitive impairment and the pains in your hands and feet doesn't help us one little bit. We need doctors to stop seeing the brain as some separate entity that lives in a psychiatry box and that has no part in an infectious or physical illness - because it simply isn't true. We're not mad; there's something physically wrong with us and it affects our brain too, because it's driving the damn bus.

[Poppet11 in reply to Chancery]

No. In this illness you distinguish or you mislead people and the problems with the illness relating to misconceptions, keep growing.

Now I spent a long time talking to an expert about how this illness presents and it can present with neurological or psychological or a combination of the two.

With the best will in the world, people's lives are at stake and if you don't understand this and want to argue the finer points of neurological/cellular damage, then fine - but you clearly don't understand the illness and yet are still giving your advice. Which from my perspective is unacceptable.

If you want to give your opinion on how muscle damage is affected and the long term implications, then feel free - because unless you understand that aspect of the illness you cannot draw any conclusions because you are not seeing the whole picture.

... and neither I, nor anyone else who comes to this forum with muscle or nerve damage, should be expected to argue and explain and distinguish as to what it is and differentiate between the pyschological and neurological damage. It should be recognised for what it is and addressed appropriately - the conversation should not skim over it, tell people they don't know what it is, tell them thyroid could be the cause, or anything else. This illness from the 1870s has been identified due to neurological damage, not due to the psychiatric aspects, and it cost an awful lot of lives and caused an awful lot of suffering - to start sweeping it under the carpet now makes a mockery of the forum.

[Hidden in reply to Poppet11]

Poppet

I also have TN like chancery, I was treated by nerve blocks (a lot of operations). Afterwards I was feeling what you would call Psychiatric, depression, confusion. My neurologist sent me for tests which showed positive for antibodies. Before that I had to go through CBT as my problems were labelled. For you to dismiss these symptoms as without considering the cause I personally find upsetting, offensive, and a mockery of any type of support group...for that reason I do not think this is the place for me to be....

[Poppet11 in reply to Hidden]

I've never spoken about TN.

And there is a very simple answer to the TN and B12 link.

It's unfortunate you are upset but since I never typed a thing about TN I'm not quite sure what you are upset about?

Can I make myself clear here - I am talking about muscular damage and B12 deficiency and distinguishing between the psychological and neurological presentations so people with neurological damage can come to this forum with confidence.

[Hidden in reply to Poppet11]

My TN was in remission, but the symptoms were increasingly becoming psychological (to all doctors it was anxiety). If my neurological had not asked for the antibody test I would not have know it was a b12 issue

It isn't the TN which is the issue, my symptoms were as you would call Psychiatric but based on a physical problem. To put this down makes the fight to get any recognition hard....

So many psychological/psychiatric symptoms stem from a physical problem. Yet so many doctors miss this and treat the symptoms. I wish someone had of told me this advise 6 years ago to question things more

[Poppet11 in reply to Hidden]

Right, let me explain something and this might make it clearer for you.

ALL patients with B12 deficiency suffer some kind of psychological effects. Look at what I've put earlier on about dyslexia.

We all have, to one extent or another: memory problems, comprehension loss, mood problems, sometimes facial masking - all to one extent or another. You are not alone - we all get it - but these are merely the initial symptoms. Remember that bit - it is only the start.

Then it appears to take one of two routes (although in reality it is a lot broader) One route is psychological. That is where the mood and memory problems turn into psychosis and psychological issues which are much more severe.

The other route is the neurological problems. This is where the spinal cord is damaged (central nervous system) and peripheral nerves and the physical injuries become severe.

What is happening in the real world now, is that many people are getting the deficiency picked up in the early stages. When the mood, cognitive, memory problems are starting - which is a good thing to get it picked up then. However, despite the fact these are the early stages, most people don't understand that - they think that is it. So that is their perception of the illness - and it isn't.

This illness gets so bad it can kill your muscles or brain or both.

It is difficult to explain to people that the initial psychological effects they get are 'minor' compared to what comes next. Because those initial problems are horrible and you feel like you are losing bits of yourself and you don't know what's happening. But that is only the beginning!

So highlighting those particular problems are absolutely necessary - but we cannot let people believe the illness ends there because it does not.

So, I've been exactly where you have been - most of us have - but believe me, it can get a whole lot worse.

[Hidden in reply to Poppet11]

I understand the whole lot worse quite well enough, I am on verge on brain surgery which my neurologist is now exploring the b12 link for deciding how and whether to tackle the nerve damage

But I still think that trying to draw a line hard in the ground between psychological and physical problems caused by the same factor does more damage than good. They are as one, they intermingle, and they come at various stages in any condition. Not all psychological problems will be before the physical ones and not all physical ones will be worse depending on each person's perspective

Lets not downplay anyone's symptoms or dismiss overlapping conditions or concerns

Last post for me, hope you all take care xxx

[Poppet11 in reply to Hidden]

I've just put a post up trying to explain things more clearly - hope it helps!

Chancery is a newbie - and her enthusiasm is appreciated - but sometimes it's best to listen for a while before drawing conclusions.

[Poppet11 in reply to Hidden]

Actually I'm quite offended. I've spent 4 years either on this board or researching the condition off-line. I suffered the initial psychiatric symptoms and then went the neurological route and got muscle wasting.

Yep, to be told in 2 posts that I'm wrong and I'm not supportive is very, very insulting.

[Chancery in reply to Hidden]

Hi Jules, sorry to interrupt, but I didn't realise you had had an antibody test. Can I ask which one? Was it the intrinsic factor one? If so, have you now been officially diagnosed with pernicious anaemia?

P.S. (Sorry if you've already mentioned this. I have a s*it memory with the retention abilities of a small gerbil!)

[Hidden in reply to Chancery]

Hi Chancery, yes I have both gastric and intrinsic antibodies. I'll know more next week when see the doctor again. Don't worry about the memory, I'm with you there!

Sorry to end up debating on your thread, I found your post interesting especially since most of my family have thyroid problems, I'm awaiting test results on this also. I'm sure given the TN you've probably been through the same issues of being passed around the houses before that was diagnosed, the psychological issues are so often easy to jump on and ignore the real physical cause...sorry I'm not as good at writing it as eloquently as you are!!

But I think its good to make connections between conditions, with my dad's chronic fatigue and thyroid he's going to ask for an antibody test given my results. Autoimmune issues seem to run in families

If no one ever bothered to except anything other than what was already 'fact' we'd all be thinking the earth was flat after all!! Surely everyone who's ever had a great idea must have been interpreted as a 'newbie' at some point so please keep on questioning and looking for answers

[Chancery in reply to Hidden]

Hey, Jules, don't you worry, butt in as much as you like - the more the merrier, I always say. You can't beat a lively debate. But it's good that you have positive antibody tests (I know it's not, but you know what I mean). I think that's one of the worst things, when you're going through test after test, and something is patently wrong, but they keep coming up negative. You get to the place where you feel great when you are proven positive for something and the doctors can't give you grief. It's really wrong, but such is the NHS mindset. We're all thrilled by a set of numbers on a sheet of paper that proves we're officially ill. It's tragic.

I was 'lucky', my TN was diagnosed very quickly, partly because it was such a classic case, and partly through sheer luck. But all the psychological factors of the B12/thyroid thing have been going on far longer. I have, very occasionally, mentioned them to doctors but they just waltzed on by them, not remotely concerned.

I also find it very, VERY difficult to broach. Partly because I find it upsetting but mostly because I feel terrified of getting the 'crazy woman' label slapped on me. Once you get that, you're done for. Subsequently I'd go to the doc for the burning pain in my breastbone, chronically heavy periods - anything physical - but I'd sort of mumble, 'I've been very depressed and find it hard to get up in the mornings' and when he went right by that I'd never bring it up again.

It's very shaming and you always feel like you're making a fuss. And let's face it, most people still compartmentalise the two things, head and body, not least because the medical profession does it, forgetting that the brain is a body organ just like the liver and gallbladder. It can go wrong too, physically, not because you're upset that your cat died.

The only person fighting your corner is you; you have to dig around and make the connections you can. Nine times out of ten you're wronger than hell, but how else can you make progress? It has to be done and the doc isn't going to do it. He has his diagnosis and he doesn't care about any underlying conditions - not unless you can wave that magical piece of paper to 'prove' them.

Nope, research and more research and just keep reading and discarding, trying out theories for size. Beats sitting on the sofa crying any day!

[Chancery in reply to Poppet11]

Poppet, my post is about MY journey through various illnesses, trying to put the parts together. It's offered purely as a narrative to illustrate how what appears to be completely unrelated illnesses do often show a pattern, even if that pattern is obscure, fragmented and full of frustrating dead ends. It's offered to show how doctors, in general, are not remotely interested in seeing a pattern in illness; they want to give you drugs and go home.

There is no "advice" offered in the piece, other than don't accept doctors ignoring your medical history or brushing you off when you feel something is relevant. If you feel that people should be encouraged never to question their doctors, or never pursue a course of investigation that is counterintuitive to current medical thought, then you and I will have to disagree.

At no point do I "give [my] opinion on how muscle damage is affected and the long term implications". If you'd like to quote where I discuss muscle damage, feel free. Someone must have snuck it in behind my back because I don't suffer from muscular damage and know nothing about it.

Lastly, I don't expect you or anyone else to "argue and explain and distinguish as to what it is and differentiate between the pyschological and neurological damage". As you brought up the subject, not me, I am mystified as to why you feel you have to discuss it at all. There are posts on all the HealthUnlocked forums offering the most bizarre advice and medical claims, some of it long ago refuted, and yet there our friends are - posting away quite freely. People read them, disagree if they feel inclined, or move on and read things of more interest. You are absolutely free to walk past all my posts - there is no "expectation" involved.

[Poppet11 in reply to Chancery]

I'm afraid I can't walk past things if I believe you are misleading people. I note you made the same post on several other forums. And a lot of the information you give is incorrect.

I think probably it's best if you look up the history on this illness, the biocheministry and the illness progression.

Maybe look up exactly what constitutes subacute - what the physical symptoms are.

There are some very good writers on the subject.

In fact, the PAS gave out a booklet which was compiled by several experts, explaining exactly how the illness can present as pyschological, neurological, or anaemia.

It appears very few people have actually read it.

If you read in another thread about thyroid, which Polaris posted, it gave the reasons as to why low stomach acid causes thyroid disfunction.

There are a lot of illnesses linked - not just thyroid.

And it has just become clear thanks to the paper Polaris posted that thyroid is not implicated as being a cause of low stomach acid but as a result of it.

Much in the same way that B12 deficiency is as a result of low stomach acid.

This illness, whatever your interpretation of it, is quite well documented and the neurological aspects - I'm hoping you have taken the time to look at the photo I provided - are very serious and are often misdiagnosed as something else.

We tend as groups to end up being diagnosed with myriad conditions that are all linked - it rather reminds me of the problems with encephalitis lethargica back in the early 1900s - it had that many presentations that it was diagnosed as many illnesses. It took a long time to narrow it down to one condition.

[Chancery in reply to Poppet11]

The information I give isn't incorrect, simply because it's my personal narrative and the conclusions I've drawn from it, so correct doesn't enter into it. But even if it wasn't, I make no incorrect assertions. Everything I've said is accurate within the context of current medical knowledge. If you could be more specific about any threats to life, I'm happy to discuss them, but your dislike of the idea of neurology embracing psychological problems is an opinion, not an error on my part, and I think we've already covered that.

I've read extensively on B12 deficiency and pernicious anaemia; I've watched the films, read anything I could find - that was relevant to my specific illness. Much of it isn't, but I read it anyway. The only sense wherein I'm a "newbie" is in time, not in pain, suffering or education.

B12 deficiency is not the end game: it's a symptom, a precursor, a stepping stone, a warning flag. It can be a symptom of simple things, like being a longstanding vegan, or it can be part of a huge complex cascade of effects from some other illness, known or unknown. The point is no two people have the same path to it. My generalisation is not your generalisation.

Because you suffer from muscular damage, (I'm assuming you do), it does not mean all B12 deficiency sufferers suffer from muscular damage. Nor does your pattern of B12 deficiency provide the definitive pattern for the illness. That would be like me assuming TN was a given with B12 deficiency; it patently isn't - but it's not unheard of either. I haven't invented the B12/TN connection - it existed before I was even born - but no-one knows what it means, whether it's causative, coincidental or part of a bigger picture.

No two people will have my pattern of illness, or yours, so I'm perplexed why you feel yours is the template for B12 deficiency, as if there is a definitive path it follows. If only. We'd all be able to be diagnosed then cured by computer bots.

I'm also perplexed as to why you feel I should be including the 'normal' progression of the illness, or its history, in my personal narrative. That's not what the post is about, nor what it is for. And even if it was, I'm not that arrogant. If I wanted to tell people the definitive history of B12 deficiency, I'd write a book, not inflict my pumped-up sense of self-importance on a health forum.

Lastly, just for the record, Helvella was prompted to put his post up because he had just discussed the subject of stomach acid/B12 and thyroid with me. I had also discussed this earlier with Polaris, so I am fully conversant, thanks.

[Poppet11 in reply to Chancery]

Most people on this forum come on here not only to post their experiences of the illness but to get help because doctors don't understand it.

You have put:

"B12 deficiency is not the end game:"

It isn't?

B12 deficiency is indicative of an underlying issue, but it is an end game.

This is what I mean. You just trivialised B12 deficiency again.

Most people on this forum come here because they are still ill. Because they have been damaged in some way or continue to be damaged because their treatment is inadequate. Because B12 deficiency is the end game if you don't get it treated in time or correctly.

And they are in that situation because doctors don't understand the illness. And you have clearly just shown that neither do you.

I have no problem with you posting your experiences of it.

However, this part:

"neurological complaints that fit best: apathy, loss of cognitive abilities, depression" in respect of this illness, is incorrect.

It is an incorrect description in respect of this illness.

You are misleading people as to what neurological is.

If you want to talk about neuropsychiatric in the context of the psychological effects, please put the word neuropsychiatric.

So people know you were affected by the psychiatric elements - not the neurological ones.

Psychological factors exist, neurological factors exist - at the beginning (and I put up a whole post about this which you haven't read) at the commencement of the illness which then progress to later stage neuro or psychological as the disease progresses.

Your description is of early stage psychological effects not the neurological effects. Please clarify this in your postings as it is misleading to other people about this condition.

... and if you were fully conversant with the thyroid, b12, stomach acid link, why did you prompt Helvella to put up a post saying thyroid was the cause of low stomach acid? If you had already discussed it with Polaris?

I'm certain you won't change your tack - and I'm certain you will keep redrawing the lines of this illness, and throwing in your own interpretation of it and providing us with some entertaining postings.

[Poppet11 in reply to Poppet11]

Actually the TN thing does interest me - and I have got a link to something here somewhere I found the other week.

That aside: You mention how Dr Fasano was the one whose work stimulated you into looking further. I believe you said "Coeliac disease can present first as a neurological condition,"

But there is a bit missing from that statement because the research in question is actually this:

"Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity"

And this is the link to his research.

ncbi.nlm.nih.gov/pmc/articl...

I'm not arguing the concept, what I am saying is what I said at the start - that the symptoms you attribute to being neurologic were actually psychiatric - and you are getting them confused.

The research paper clarifies things better - you might like to read it.

As I said, your statement was misleading.

No doubt that this illness has neurologic and psychiatric effects - but you have to know the difference if you wish to speak on it with any authority.

I've said before that a major problem with this illness is that many people find the benefit of B12 while their illness is in the early stages, which are primarily psychiatric - therefore they do not appreciate how bad the later symptoms are whether they are psychiatric or neurological. They get the neurological and psychiatric confused - therefore they trivialise what others are going through.

I think I can sum up at least part of your original post by saying this illness is complex - however there are certain patterns and new things are emerging every day. However since I am one of the few people that bothered to pay for a stomach acid test over 3 years ago, you could say that I've been aware of the issue for quite some time.

Now you've just been arguing for 2 days that neurological is psychological. May I suggest you take the issue up with Dr Fasano - because he appears to think the 2 are separate issues as well.

[Chancery in reply to Poppet11]

No, Dr Fasano didn't prompt me to look further, he was merely part of research I did into coeliac. I find his work interesting because a) it's scientific, not hearsay and b) he gives the first sound theory I've heard for gut permeability and the gut/brain barrier. He also believes in the importance of the gut as the centre of all disease and has some amazing knowledge about the gut 'brain', a completely ignored aspect of the body's functioning.

As for the dead horse you are still flogging re neurological v. psychiatric, I think you'll find that that the paper you quote reinforces the idea that psychological conditions are part and parcel of neurological damage, not a separate entity. Unfortunately I can't cut and paste from it, but you'll find under the introduction, third para, a list of all the neurological and psychiatric conditions he believes can be laid at the coeliac door, covering the full gamut of nerve-related disorders. ALL nerve-related, therefore ultimately, by implication and dictionary definition, neurological. That is, indeed, the point he is making and the whole purpose of the paper.

The reason it is headed thus, and divided thus, is because modern Western medicine, and you, firmly believe that these conditions are differentiable in origin. He is including psychiatric conditions separately, under that heading, because autism, depression, attention deficit disorder and schizophrenia - to name but a few - are considered emotional in nature - not physical. You will note in the list that he mixes neurological and psychiatric quite cheerfully; he does not keep them separate, because the entire point the paper is making is that presently Western medicine, and you, consider these to be two separate entities, one physical and a manifestation of bodily disease, the other psychological and a problem of upbringing or spiritual crisis.

Alessio Fasano's premise is that ALL these conditions can be caused by the autoimmune response to coeliac disease. In other words, to spell it out, that there is no difference between ataxia and depression, MS and attention deficit disorder. They are ALL due to neurological damage: damaged nerves. I cannot make that any plainer, nor can he.

If you wish to hold onto the belief that neurons do not play a part in the brain and that demyelination does not occur in the head and cause disordered behaviour as well as physical signs of illness we need to agree to disagree and leave it at that.

Essentially we are having a discussion about semantics. You think it is "trivialising" because I consider depression, apathy and loss of cognitive abilities a forerunner of the nerve demyelination in my brain - a neurological problem, not psychiatric. They were my red flag, which I didn't take seriously enough. The next step for me, by family history, would be Alzheimer's, total destruction of the brain and body. This is far from trivial to me - hence my determined journey to get to the bottom of the underlying disease/s that produced B12 deficiency and possible hypothyroidism.

Like Alessio Fasano, and unlike you, I believe that psychiatric conditions are often - perhaps usually - not emotional, but physical in origin. I don't consider them trivial, nor do I consider your idea of them being somehow less important than muscular damage either true or relevant.

I am happy to hear you extol your opinions till the cows come home, but you understand, I am sure, that I will not change my posts to follow your doctrines. There are better things in life to be policing than the pronunciation of potato.

[Chancery in reply to Poppet11]

B12 deficieny is not the endgame. You yourself have just said "B12 deficiency is indicative of an underlying issue, but it is an end game."

How can anything which is "indicative of an underlying issue" be the endgame? Diabetics present with extreme thirst; parasitic fevers present with ferocious temperatures; tumours make you stagger like a drunk - does this mean that we can give diabetics enough water to get well, cure a parasitic infection with ice or pop a tumour victim in a wheelchair and they are all tip-top and ready to go - disease cured?

Diabetic thirst unchecked will kill you, bacterial infections can decimate continents, even if you manage to lower body temperatures, and a tumour patient will die, in or out of the wheelchair, if you don't get that growth out of there. The symptom cannot be the endgame, even if it will kill you.

I fail to see how acknowledging the importance of a symptom is trivialising it. B12 deficiency is a very serious symptom. Just as lethal fever is, or diabetic coma, or slurring your speech and being unable to lift your arm. They are all red flags of the most crucial nature, but they are not the end game. To think they ARE the end game is to obsess over the sneezing and ignore the flu. How is that thinking helpful to the cause of B12 deficiency?

If I didn't understand B12 deficiency, why do you think I fought - and fought hard - to be treated for it? What part of Trigeminal Neuralgia do you imagine is a walk in the park? Do you believe B12 deficiency is "trivial" to someone whose absence of pain depends on it? Do you imagine someone whose entire life may BECOME pain thinks the management of B12 is just an afterthought, a side-line?

You seem to have a personal sliding scale of suffering in your imagination and you feel some people's B12 deficiency is worthy and others isn't. Or that if you present with 'classical' symptoms you somehow have more authority.

You don't. B12 deficiency is not a badge of merit, nor is it something you have ownership of or earn. It is a deficiency of an essential vitamin. It is a symptom that creates further symptoms when left unchecked. It can kill you if neglected. That's why it's an essential vitamin. It is not possible to "trivialise" the word essential.

As for "prompting" Helvella to put up a post; that is something else born in your own head. Helvella had been discussing this with me beforehand - I believe on the thyroid forum. His new post was, essentially, the ideas and material we had been discussing, ipso facto, our discussion had prompted his post. We were not in communication; I did not use mind control and he is not my puppet.

[Poppet11 in reply to Chancery]

You haven't even broached the fact you haven't read that article - you don't even know the title.

You misled people with your original posting regarding neuro damage and what it is - and that is because you don't understand it.

Cause and effect -

B12 deficiency is caused by something else and for many, can be the end game.

You said it wasn't.

I wrote a post the other week telling people to check all references. I think you made my point quite nicely.

And this you write "You don't. B12 deficiency is not a badge of merit, "

People are on this site because they want the correct treatment and the injuries caused by their deficiency acknowledged. Do you really think this is an appropriate thing to say to someone who had a severe B12 deficiency - and to the many other people who had the same?

If Helvella wants to be 'prompted' to fire other people's bullets without checking into the facts, then that is their choice. However I can never understand why the people that do the 'prompting' can't make their own postings.

Next time you write a keyword dense posting you might want to consider that facts also matter.

[Chancery in reply to Poppet11]

We don't agree, Poppet. We will never agree. I will continue to think the way I do and postulate my ideas the way I do without consulting you. Why do you feel you can somehow change that?

Might I suggest you open your own forum, where you can police everyone's thoughts and approve who is good enough to speak and who isn't. You will be MUCH happier, and the rest of us will be free to discuss our ideas in delirious unchecked abandon. Ah, what a glorious world that will be...

[Poppet11 in reply to Chancery]

I beg your pardon?

Are you telling a patient who has suffered injury from B12 deficiency that they shouldn't come to the forum and object to your inaccurate postings?

You may forget - but I am one of the patients on here who has learned by physical experience what B12 deficiency does and the injury it leaves patients with.

Please don't make this a personal attack simply because I object to your incorrect description of the illness.

Please keep posting. I only retort to inaccuracies.

[Chancery in reply to Poppet11]

I am not a member of parliament. You can't petition me for change. You "object" to bad treatment, not ideas. They are not physical things that can do harm. No-one was ever killed by an idea. Discussion is not "objecting", it's the free exchange of ideas. That keeps it friendly and civil, and thus facilitates more free exchange of ideas. It's a great system.

The forum idea was a joke, but given that this two-sided approach to debate is not to your taste, I believe a forum of your own would bring you far greater contentment than trying to rein in free thought on this one. Why subject yourself to this frustration? I've read you say so yourself many times, just in the short time I've been here, that no-one appreciates your four/ten/forty years of hard work. In fact, you say it above.

If you are finding the forum's persistent resistance to your dogma so taxing, why persist? Why not take control and carve out your own stomping ground? It has to be better than working yourself up into impotent rages because no-one will listen to your hard-won wisdom.

Or a book? In a book NO-ONE can disagree with you. It is the perfect medium, and God knows, the world needs more self-help titles, especially about badly-understood diseases.

I think you'll agree we've 'discussed' neurological v. psychiatric to the point of repetition. You've also firmly established that I am a danger to society, and it was your duty to save lives by "objecting" to me. You have carried out your mission to the full. Your work here is done.

Now are we finished?

[Hidden in reply to Chancery]

Chancery, I reccomend you ignore the comments and don't respond further...What's the point, you're never going to change the mind of someone so stuck on one thought path. If you see the post made after the discussion I got into by the same person aimed at 'newbies', noone responded. Maybe that's the best way to deal with someone so confrontational in their expections for how a condition has to present for it to become important to them.

The real thing to appreciate here is that others are inspired by your comments and the investigation to do the same, don't let anyone tell you that giving your version of events isn't helpful. Best of luck x

[Chancery in reply to Hidden]

Thanks, Jules, I appreciate you taking the time out to tell me that!

For me, the single biggest problem I face is that my condition (the TN) is considered incurable and degenerative. Once docs hear that, they don't want to look any further or do anything more for you than give you drugs. I found that crippling for the first six months, swinging from severe depression to desperation, trying to find ANY reason why the TN might have happened. When I discovered the B12 connection - and when it WORKED - I felt I had been given a tiny chink of light. It was priceless.

On the back of that, I've also discovered this underlying hypothyroidism. Neither of these things would have happened had I left doctors to it and sat in a suicidal stupor.

Doing this HAS to be better, even with all the fighting and tears you have to go through to be heard, and I just want other people who are stuck in similar situations to know that even medical ignoramuses like me can stumble on truths if they just persevere. Plenty of rubbish and missteps too, but hey, if you don't try, you don't get!

[Hidden]

Hi Chancery,

So glad your TN has gone into remission, long may it last!

Yes your post makes sense to me and yes you alone will eventually see links in the puzzle , and there will be some links that will never seem to add up. Sometimes years later an other link is found..

Kind regards,

Marre.

[Chancery in reply to Hidden]

Thanks, Marre. remission MIGHT be ambitious at the moment, since I'm not off the drugs, but the fact that I'm managing to decrease them, and I've largely lost the tooth 'sensitivity', is as close to a remission as I've ever got - so here's hoping!

[Lyneet]

Thank you for the resourceful information. I currently take black seed oil 3x a week to stay healthy and i no longer get colds or allergies. This is the best Dr medicine i ever took in my life, here are the benefits of this oil below. I stay away from doctors as much as i can and only go to the hospital for an emergency or yearly check up. Doctors treat and they do not cure disease or illness.naturalsociety.com/10-benef...

[LadyNZ]

I couldn't agree more!