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.