God only knows where I am going to end up but must
Write and let you all know. Doctors put me on diazepam....
Big mistake feel week as a baby. Anyway Been to see crisis medical team after begging doctors for b12 shot..... 2 months overdue as they said my levels were double required.
Little do they know about b12 deficiency, I begged them to phone martin Hooper but doubt they will.
Been ill for over 4 months stomach issues, constant runs everyday. Not one solid stool..... tests done no apparent reason.
Anyway my life on hold till I make recovery... my bed has become my life for now.
Received letter from crisis centre and I quote what is in the letter
the medical profession is due to change its stance significantly
In the coming years (regarding b12). Well done martin, it may come too late for me and others, but the future (hopefully
Thanks for your message, it's fantastic to know that strangers are rooting for you. If only there was a magic bullet to put things right. Twenty years of issues you d think I would have this worked out by now, but no,
One thing I have found out is coffee depletes the body of numerous vitamins and minerals, when I kept to water I felt fine. So in future coffee is a no no.
Perhaps it's worth looking into what that does to the system.
Also in the past I would suffer exactly the same thing for a few months then overnight suddenly it was like I was transformed. Just praying that transformation reappears sooner than later.
Once again thanks for your message
Was refused b12 because of high levels, but as I was 2 months overdue he relented and gave me one on Monday. Did improve for day or so, bought b12 lozengers and having one a day. Am seeing improvement but slow .. Just have to wait and see if this will kick in soon. I asked him to contact the society but I doubt he will.
Fortunately you cannot overdose on B12 so high levels when supplementing are not a problem.
I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years and I'm still "clivealive" and over 77 :).
Thank you Sallyannl for bringing hope for an end to this shocking practice. My relative was referred to the Crisis Centre and, instead of sufficient treatment with B12 injections, was given antipsychotics by her surgery for hallucinations, hearing voices, etc. - they ignored the other very obvious physical symptoms of B12def. (more money for the surgery in classifying this under mental health!)
I don't fully understand why it should too late for you ? Hidden has already said, and you obviously realise, that insufficient B12 is the problem, so would it not be possible for you to ask the PAS and the Crisis Centre to intervene with your GP to explain the need for more injections or maybe you've done this ?
Self injection is another option and has brought many of us back from the brink......lots of support here if you decide to do this - good luck SalliAnni and don't give up......
PS. The other thing your GP and the Crisis Centre have maybe not considered is that Diazepame will deplete B12 levels further so sn Injection once every three months is definitely not good enough !
Hi Sallyanni, there is a Facebook group for B12d, I have this condition although not PA. I also self inject as the NHS does not provide enough to keep me well. Look for a group and join the PAS, they can and will help you.
Keep fighting Sallyann, I have had the runs for weeks now and am waiting for results of yet more tests, I self inject once a month and was feeling better until last month when I seem to take a dip again. I use the B12 spray as well as injections I know it does not work for everyone but might be worth a try. I dont think the hot weather helps any of us feel any better. Take care and hope you feel a little better soon.
I only ever get better if I have frequent injections: after my 6 initial loading injections, like most B12 deficient people, I was given 1 injection every three months: felt really ill very early on and the injections made me feel just slightly less worse, so became clearly unwell quickly. Then I was told I had Functional B12 deficiency (my B12 levels at this point were >2000 ng/L, massively above range) and given loading injections again: 2 every week - and on this frequency, it took a whole 6 months to get any worse. Then, because this was not working, I was put onto 1 a month and so back to getting worse again. Then a haematologist advised my GP not to give me more than the "recommended" dose of 1 injection every two months.
I could no longer put up with getting worse in order to prove to various experts that I was getting worse. I had seen all the people that I thought could help me and they did not or could not. So I started self-injecting in September, and found that if I give myself an injection every other day, I get slowly better. If I miss one or try to do too much, I get worse again.
This is just my story so far. It's not true for everyone. It takes a long time to find out exactly what your body needs and I certainly don't know all the answers for me, but at least I am improving things. I have had daily diarrhoea for over 3 years now- haven't managed to change that yet !
Thanks for all your comments. Been asleep for most of four days, and too exhausted to do anything.
Brain over working, and body exhausted.
Will have to de-clutter all negative things and focus on getting better. Doctors have been good with me, but haven't been inside my body and brain to understand,
Or to fix the problem.... and everything they give me hasn't worked.
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