The Final Chapter...

[Poppet11]

I've been knocking about on the forums for a few years now - but it's time to close. Before I do I want to explain a few things which may, help other sufferers realise what can happen both socially and physically when you get a b12 deficiency.

This is going to be a long post, try and hang on in there because it may help you in the long run.

I was never a 'sickly' person, in fact rather the opposite.

It was a standing joke in my family that by the time I was ready to go to the doctors I should've just cut out the middleman and phoned an ambulance!

So it came as a shock to me when I wasn't well to go to the doctors and be patronised. I was clearly, by my standards, quite ill. I hadn't gone when I'd had a sore tongue, I hadn't gone when I'd got cracking at the sides of my mouth, and I hadn't gone when I'd got pins and needles in the ball of my thumb. I was fatigued, had a bad back and cold but still I hadn't gone. I only went when I literally couldn't get my head off the bed and it juddered into position (cogwheeling?)

But I was still patronised.

I was single and self employed. If I couldn't work I couldn't eat. I also ran a smallholding single-handed. Please note the ALSO, it was not a form of income.

Yet all my doctors could find was a d3 deficiency. And I reacted badly to it. Very badly. Blurred vision, bone pain in spine, scalp itching. My doc told me I was imagining it. I researched it and realised I quite possibly wasn't.

My condition got worse; I blew veins, I got weaker, I rarely smiled, I could feel anger easier than happiness. My legs were heavy, I stumbled a lot. My vision got so blurred I couldn't see what the animals in a field were 100 yards away. I was sweating at night and cold in the day. My feet were freezing.

I lived in Orkney.

This is relevant - this is the MS capital of the world!

My arms got worse and I went from being able to easily lift a 25kg sack to scooping feed out of the sack with a mug. I was in constant pain. My muscles were constantly jumping. I had to carry water buckets around 1/4 full in both arms. I stumbled and fell all the time. One night I was so cold I fell asleep clutching an oil fired radiator. When I woke up I had blistered my knee but couldn't even feel it.

I was desperate for help. Really desperate. My life was falling apart and no one would take me seriously.

I had to get rid of half my beloved pet sheep, I simply couldn't care for them anymore. These were pets. These were animals which had been rescued and lived the life of Riley in stone buildings with lots of hay and they could move where they wanted to. The last I saw of them they were trudging toward a ruined building with no roof in driving rain - they were separate from the rest of the flock they had gone to live with. I was heartbroken, I so wanted them back and for us all to be safe.

I went again and again to the doctor from Hell. He would laugh at me and tell me I wasn't ill. He never examined me. He would tell me to 'shut up' when I tried to tell him what happened. He refused to sign me off sick saying I couldn't claim anything anyway because I was self employed - he didn't care that I could have starved. This well paid, cossetted fool.

I had to put my home on the market. There was no option.

Things went from bad to worse. My favourite goat hurt his leg and was having trouble getting up. He wasn't fatally hurt he just needed help. And I couldn't help him. My arms were so weak I couldn't even wash my own hair. He was destroyed. I had to dig the hole myself in the snow and drag his body across the frozen ground.

My doctor still laughed.

I then asked to see my blood test results and found a b12 test that had been overlooked from 10 months previously.

I didn't get in touch with my GP straight away. I researched it. I make all this sound easy - it was not. I could hardly see. I couldn't interpret the blood test results. I kept forgetting what each one meant and I took days to do it. My comprehension was vitually nil.

I was ill, broke, freezing and physically busted.

I was told by a local that they couldn't be 'seen' to help me - there was only one doctor you see and I was told 'we don't want to end up like you.'

But I did figure a few things out. I'd always been told I didn't have anaemia. I knew that b12 deficiency caused neuro damage without anaemia right from the start. Perhaps, if I'd had haematological indicators of anaemia I would have looked at things differently, but I didn't. I sort of started from the middle.

I was told damage could be permanent - but I never thought mine would be - who does?

I didn't go back to my GP until I'd self medicated with 6,000mcgs of b12 - he took a blood test, it was still a massive 178. I knew then that I'd nearly been dead by the time I'd spotted it in my results.

And what did my doctor do - he refused loading doses and prescribed 50mcgs per day. He then, without my knowledge, declared that he had been the one to 'luckily' find the b12 deficiency. Duplicity doesn't come into it.

He wouldn't look at my remaining symptoms in light of the b12 deficiency. He wouldn't refer me for further investigation until I'd put a complaint in. He was going to do nothing even though he knew I was in a very poor physcial condition and he knew how bad I had been.

A consultant wanted to refer me for an MRI - not because of the b12 deficiency (that was my first experience of the 'your b12 levels are normal now) but because of the neuro symptoms - he thought I'd probably got MS. Remember I was in Orkney.

Cutting a long story short I got nowhere. I sold my house for a pittance and left.

My family had told me they would help me. They would sort out the doctors and the remaining animals and housing.

This was untrue. All they were interested in was convincing me that a b12 deficiency couldn't make me ill. It was sorted - despite me looking like a bag of bones. They wanted me to 'work harder,' they stuck their noses in my life to an unbelievable degree. They made sure I lost my housing, pressured me constantly to have the remaining animals destroyed that they had encouraged me to bring so they could 'help' me with them. They wanted me to help aunts, and sister and friends and friends of friends. I just needed to 'work.' They had meetings about me. They phoned my doctor and a few other people besides.

... and all this time I knew that a b12 deficiency could result in permanent neuro damage without anaemia.

Yet, apparently, no one else did.

My doctor gossiped with anyone who wanted to speak to her about me. No one wanted to see me signed off sick. They wanted me to work - but I hadn't got a home to work from. My money was dwindling at speed - and my family were only too keen to relieve me of it.

My doctor never told me that she had been speaking to other people.

She sent me off to a neurologist with a referral letter that was, when I got sight of it this year, ridiculous.

Even though I'd got a knee that wouldn't bend and quads that weren't working and left sided balance problems the neurologist (a very high profile individual) declared no hard neuro evidence.

Still I could not get recognised as being ill.

Still I had no income.

What the hell did I have to do to get a day off!!!!!

My family saw my efforts with the animals as 'evidence' I was not ill. If I complained I was told I was crazy or lazy or both - this from people who don't work and haven't for a long time.

My sister got together with my friend who was renting me her house - and got her to throw me out onto the streets. I lived in a car in the snow. Nobody cared where I stayed at night.

I went back to see my GP, I begged her to sign me off sick. To acknowledge that I was ill. That my family were saying I had mental health problems. She refused.

... and it was then I decided I had no option but to leave the country.

The UK was determined to starve me to death one way or the other.

But, I'll remind you again, I knew that b12 deficiency was a neuro illness and not a blood condition. Shame nobody else did.

My sister's final act of venom was to phone the mental health authority to report my lack of mental capacity. They didn't agree with her. I wonder what drove her to take such action - perhaps she thought I'd got a lot of money for my house?

In France there seem to be an awful lot of Brits who have got themselves either a) into financial difficulties, or b) are drunks. Some are both.

Without having my damage acknowledged in the UK I could get no help in France. Neither could I get a legal rental property because I was still lacking a steady income.

Most of the people I came across had hidden agendas and they weren't beyond stealing, forgery, and plain old lying.

I was still outside the system in the UK. I was still ill. I was doing my own exercises to keep myself as fit as possible. I was treating myself and researching causation. I was still trying to earn a living. I was contacting so many people trying to raise awareness that I've lost count.

The best response I got? From HM The Queen. She sent my letter to the department of health. They bounced me around.

And still I thought everyone understood what I understand. That the neuro damage can appear without anaemia and that it can be permanent. It seems they don't. No matter how many times they read the words 'neurological' and 'permanent' they believe it can be reversed with a couple of injections.

My final chapter brings this story up to speed. I was rented a house that I thought was safe and was going to allow me to put my life back together. No such luck. These people weren't poor and they weren't drunks - just plain old greedy.

They wanted me to look after their animals, my animals, do the fencing, mend the buildings, pay for the animal feed, clean it all up.

Oh, and they wanted me to be effective in running my own business too.

And they were 'helping' me get over my belief that I had permanent neuro damage by writing me timetables and suggesting I take relaxation classes.

... that was until a doctor here confirmed I was ill.

Then they gave me notice to quit - they want rid of all the animals too - these animals lovers couldn't care less that they will drag the bodies of my animals out on chains. They have told everyone I'm lazy, dirty, whatever.

Nothing I could do was ever good enough.

So, now I'm skint, homeless and my injuries, thanks to all the 'help' I've received, are a lot worse.

I'm excluded throughout the world for any kind of benefits because, really, I was a self employed woman who couldn't get acknowledged as being ill.

My doctors in the UK are quite aware of what they have done. They are quite aware of the havoc they have brought on my life. They admit nothing and do nothing to remedy the situation.

Well, here's their bad news. Now I get, for the next few weeks at least, to travel around. I will go to every internet cafe I can find. I will post every name involved in this farce - except in this site of course.

I will post how they are getting it wrong.

I have seen precious little compassion or humanity over the last five years - I intend to show none.

Remember - this is a neuro illness, your damage could be permanent. Be ascertive but not needy. Understand what it does. Understand that if you don't get the right treatment - which is not one jab every 3 months which simply brings blood levels into the normal range - in years to come you will be diagnosed with fibromyalgia, rheumatic illnesses, auto immune and a plethora of other conditions which are as a result of poor treatment for b12 deficiency.

Know this illness and stand up for yourselves. If anyone even hints that you should have no remaining symtoms after treatment commences, walk away. They aren't worth dealing with.

[wadeyJ]

Poppet 11 I've been so moved by reading your post. I've only been using this forum for a few months but I know that you have been so helpful to others, including me with your knowledge and encouraging advice. To many a B12 deficiency sounds so trivial but your experience shows how devastating and far reaching the consequences of it is. Sending big hugs and best wishes jane

[Poppet11 in reply to wadeyJ]

Thank you.

This illness is a strange creature - and I've said before that we all interpret it relative to our experience of it - so it is many things to many men.

And it does sound trivial. It sounds so unthreatening and simple and insignificant.

But to raise awareness we have to understand what it is capable of no matter what our own experiences of it.

And if anyone is interested HM The Queen is one intelligent lady. Out of all the people I wrote to, celebs, all those supposedly interested in health care and mental health issues - she was the one who actually read what I put and then she actually DID something about it. Okay, I didn't get any further - but I was seriously impressed by this woman. Not as Royalty but as a person.

[Jcwg in reply to Poppet11]

Poppet11, I've only been using this forum for a few weeks, I am shocked and saddened to read this is the final chapter, your humour has tickled me in recent posts and not so recent. I've only had my fight with the NHS for nearly 2 years, that was when I was diagnosed, but realise now if they had listened it might be 5 years by now. I'm sorry you have suffered so much in the past and wish you a much better future. Take care x

[Hidden]

Hi Poppet,

So sad to read your story, sure hope you will get a better quality of life in the future, what ever that may be for you. I totally agree that every one should be aware that the opinion that because you are on B12 treatment you are now fine, no matter how you feel, that notion is very, very floored. Only you know how you feel, only you know if something is wrong and you are not getting what ever it may be you need to feel well. And unfortunately its only you who seems to have to find the knowledge to sort your self out, and that is wrong, it should not be like that.

Kind regards,

Marre.

[Poppet11 in reply to Hidden]

It's not a case of how anyone feels, Marre, it's a case of doctors looking at the neurological damage caused when a patient was b12 deficient.

You can have enough b12 to keep you out of further trouble after the deficiency has been identified (and they aren't giving most patients enough to do that as they didn't with you) but the world has got to start waking up to the fact that patients who have had a previous b12 deficiency were physically damaged by it - as in your case.

I'm sure your damage isn't related to how you 'feel' but to physical damage?

I'm certain Dave Carr doesn't just 'feel' crippled - and Dave Carr didn't have anaemia.

Its a misnomer that all physical damage is rectified once a patient has b12 levels brought into the normal range - and that's why most patients keep on having symptoms.

It's nothing to do with the haematological symptoms of anaemia. It's neurological and cellular damage which hasn't had enough treatment.

And it is also why, in Orkney, they have the highest MS figures in the world - because they have no understanding or comprehension of b12 deficiency. They rarely test for it, if they do they treat it very badly, they do not understand the symptoms, they certainly don't recognised the damage caused, they think all patients need to have anaemia first - It's in their guidelines when checking for b12 deficiency.

I am of the firm belief that this is why Orkney has the highest recorded incidence of b12 deficiency in the world.

If you could see the rubbish that their 'expert' wrote back to me it would make your hair curl. It was nothing short of nonsense.

And this is from someone who had never even seen me.

They haven't got a clue what they are doing.

I'm certain too that the clinician I saw recently actually does recognise my muscle damage as damage. And the muscle fibrillations. It affects my walking, it causes pain. It's nothing to do with what treatment I get now but what damage was caused when I didn't get treatment. How sad that no one in Orkney saw fit to do a neurological exam. How they never jumped on the connection between b12 deficiency and neuro symptoms.

[BrecklandRanger in reply to Poppet11]

You mentioned MS being prevalent in up your neck of the woods. Just watched a presentation by Dr Michael Holick on Vit D, and he's seeing patients who mostly live around 35 latitude being misdiagnosed (Orkney is close at 50).

youtu.be/hiGBVDcbFVk(Not working as expected?)

Anyway, hope you stick around as I've gained alot from your posts.

[Poppet11 in reply to BrecklandRanger]

I don't know whether it is vit d they are trying to research as being genetic in Orkney.

But I do know that vit d is recognised as being synonymous with b12 deficiency.

What they don't do in Orkney is test for (or treat properly) b12 deficiency.

I was originally diagnosed with vit d3. When I got b12 the d3 problem reverted to normal!

For a region with a very low population, around 20,000, they achieve an awful lot of highs!

[Jessiepup]

This is such a harrowing story, poppet. You commented on my post last week where I explained my mother had died at 58 and that she had lost her sight.

So sorry you have been through this, you post should be distributed around all GPs and Doctors.

Xxxxx

[Weewull]

I have learned so much in the past two months thanks to you and others on this forum.

Thank you and good luck to you in all your future endeavours.

[Poppet11]

I don't want to sound too dramatic here - but I can't see there will be future endeavours (I'm impressed you can spell that!).

I've had no societal support at any point - all I've achieved I've done through hard work whilst I could maintain it even as my condition has deteriorated. And my condition has deteriorated because I have never, at any point, been allowed to rest.

The misconception that b12 deficiency is treated once bloods are normalised, has, for me, ensured that every contact I have ever had, has focused on making me 'work harder.' The overall effect has been that the damaged muscles and nerves have had that damage compounded, not mitigated. The threat, if I haven't worked harder, has been consistently to question my mental capacity.

No one at any point has assisted in getting the correct medical advice or care or rest - or benefits. Work or die. If doctors will not acknowledge you are ill, this is the situation.

Now, the only time I am ever comfortable is sat at this blasted computer! Last week I drove 40 kms - the longest I have driven in a while. On getting out I simply lost my balance and fell. I was off-balance for the rest of the day. But I still have to work. And I have had to do so every single day since I first went to the doctors. In the last month, when I could see things drawing to a close, I simply concentrated on the boards and trying to get the message across so this doesn't happen to others.

But I am not the only one. If you look at the NHS Choices b12 page you will see people who are still trying to go to work when they are clearly not fit to do so. They cannot get treatment either. They then lose their jobs...

How can this be happening to people?

I will however, be very, very happy to post - on other sites - all the names of the people who have been involved in separating me from my savings (usually illegally) and my hard earned money, even when I was ill by them insisting I was not - because they 'know' about b12 deficiency.

It's going to give me the greatest of pleasure to name and shame the people who took my last penny!

... and I'm just editing to add about the car thing.

I've been thinking about this and I think I know what happens.

One side of me has more damage than the other and I need to work both sides to the same extent. So, typing isn't a problem.

With driving, one side (and in my case the stronger) gets exercise - gears, brakes, accelerator etc, but the other, the weaker, gets relatively little.

I 'trained' my body to go 5, 10, 15 kms. Because it used to happen then. And I thought I'd got the situation beat - but apparently not. The 40kms was too much inactivity for the weak side. So when I got out of the car, it either wasn't working or I was too strong on the strong side - not sure which.

It then takes a day, usually a night's rest, to 'level' my sides back up.

Sounds silly, but anyway. Might touch a cord with some other people out there.

PS - I'm okay when I'm actually driving - it's the after effects that are the problem!

[wedgewood]

Dear Poppet11

I can't tell you how moved I am by your story. I always read your messages. You have given such help and advice to others(including me)I will miss you from this site. It will be the poorer for the lack of your input. Your example has given others the strength to carry on trying to get better treatment. I had to go privately to get diagnosed. And now I have to pay to get the injections I need----but I have started to self inject. But I think of all the P.A. patients who don't have a computer/can't afford one, mostly older people I suppose. Martyn Hooper deserves a medal (at the very least)for founding this Society.Whatever you are going to do now my very best wishes go with you . It's such a shame that you are leaving us. You are part of the family.

[Lilian15]

I have just read that GP's in the UK are going to be offered £55 per diagnosis of dementia. So they are not going to be that enthusiastic in diagnosing thyroid conditions, B12 deficiencies, or any other condition that mimics dementia.

[Poppet11]

It's alright them diagnosing dementia but who is looking at causation and taking into consideration b12 deficiency?

Doctors are just running around 'diagnosing' or 'labelling' a load of illnesses and declaring that b12 deficiency is of no consequence when they return the patient's serum levels to normal.

There are so many illnesses now of unknown cause and so much money wasted on research because they aren't including the obvious and they don't include the obvious because they don't understand it.

If they did, they would calling patients like me back in and retracing their steps and sorting out the mess!

They should be recalling in patients at the speed of light at the moment. They do nothing but move on and mess the next person's life up.

For £55 apparently!

[aishling]

Hi Poppet 11. I don't spend much time posting on this forum, but I do read the posts with interest, and so I know how much help you give to others. As a person who at one time had to keep working whilst being ill, I understand and respect how hard it has been for you. And I have to say, I am worried for you right now. You describe yourself as being skint and homeless. This is troubling. You also say in your reply to Weewull that you can't see any future endeavours.

I have absolute admiration for the lengths that you seem to go to in order to care for animals. To care so much and work so hard even with this illness takes immense strength of character.

I hope that you, and your animals are safe and well. I hope that, wherever you are (is it still France?), you have some support around you. You come across as a strong, determined individual, and I think it is about time that some good luck comes your way.

[Poppet11 in reply to aishling]

Thank you for your reply. It's been a tough day.

It is indeed a bizarre situation and my logic or rational behind the animals may seem strange to some.

It's a contradiction in the UK, that we put a lot of focus on animal welfare and under ordinary circumstances it is perceived as a good thing. But when the chips are down, the attitude tends to be 'get rid of them.'

Well, I took them on, I take responsibility.

Not only that, but I've had to dismantle most of my life due to the incompetence, ignorance and inhumanity of the medical profession. I have been forced into situations and actions that I would, under normal circumstances, consider to be incomprehensible.

And now I am being forced into my last action.

I have to be honest here - if I'd got a bolt gun and was given the choice to destroy the people who have destroyed me or the animals - it would be no contest.

That is how much fury and hatred there is in me at the moment.

We have harmed no one. I have worked hard all my life, I took in animals that other people got 'tired' of, I took in the injured and gave them a good home. I owed no one anything and I am brought to a situation of destitution by the very people I went to for help. And, even when they were proven to be wrong, they have not had the humility or professionalism to rectify that wrong. They disgust me.

I am very experienced with animals - and they can't tell you when they are ill. Therefore you get to be a master of observation.

Yet we, as patients, are going to doctors, with obvious physical problems. Whether these manifest as distortions of personality, or we have physical injury - but they are all swept under the carpet by this ignorant, arrogant and superscillious bunch of people and they are not being brought to task.

And they should be.

I've said many times, the people on this site are the thin end of the wedge. And if you haven't got support or the ability and personality to assess your own situation and take alternative action then you will die. And I am certain many, many people do.

I spoke to someone a couple of years ago who helped me out with something and I've seen precious little of that - I thanked him sincerely and his response was that it wasn't necessary, he said, "We help each other. It's what we do when we're human."

Maybe doctors should forget the 'do no harm' mantra and have that on their desk instead because I think they need to start with the real basics.

I thank you for your understanding.

[aishling in reply to Poppet11]

We do need to help each other if we want to call ourselves human. Otherwise, we devolve. I wish I could say that my mind is at rest concerning your circumstances, but that would be a lie. Whatever your 'last action' is, I hope that it is not something which puts you in harm's way. I hope that I am not being over-dramatic here, but I do know the places one's mind can go when the chips are down and the B12 is low.

I remain worried for you.

[Poppet11 in reply to aishling]

It's not a case of suicide. It's a case of having no way to survive. It's bizarre. Truly bizarre...

For years I've been saying "excuse me, but it's going to come to this if I don't get help." "Erm, excuse me." And I've just been surrounded by people telling me to work harder.

That went well, I've now been in pretty much a mess for the last couple of months - and cerainly no sign of any improvement.

What is it with people when they can't understand nerve damage - are they so indoctrinated about vitamins they really cannot understand the significance of them?

What can you say...

[aishling in reply to Poppet11]

I have sent you a PM.

[Kidsmomof9]

I truly appreciate yor post. You have very eloquently described the devastation that this illness can bring.

[Kidsmomof9]

I truly appreciate yor post. You have very eloquently described the devastation that this illness can bring.

[wedgewood]

I read on the internet that doctors are no longer obliged to swear the Hippocratic Oath!

[tiredone]

Hi Poppet.

I really feel for you.

I am so tired today my GP has stopped my injections and I feel like you do.

I am so sorry that you worked so hard and tried to fight so hard, It takes it's toll, I know.

Please continue to post on here. You need us with you, we need you with us

xxxx