I have not been on site for 5 years.
I am appalled at the lack of progress with this problem.
Why is this? Why despite meetings and member and lobbying this problem has not commanded a higher profile and I can still not purchase B12 or syringes over the counter in this country?
It might seem unhelpful but I think the answer to all the above would have to be 'Don't Know'! The doctors don't know about PA, they don't know about the treatment, they don't know how cheap it is to treat people, and we don't know how to get it into their brains!!!
All we can do is keep plugging away, nibbling at the intransigence, keep waving the BCSH, NESAQ guidelines at them and if necessary, buy our own supplies. We are about to go down that route and will be keeping a meticulous diary of every single penny it costs, and have already begun the process of making a formal complaint against the haematologist who told us an absolute load of rubbish, and in that complaint we have made it clear that one day, when the 'guidelines' are more sensible and treatment finally changes, we will be putting in a claim, asking for interest too!! Will they take a blind bit of notice? I 'don't know' that, either!
I think there has been significant progress. Today I collected my latest B12 prescription from the chemist and was pleased to see they have updated the leaflet with the latest guidelines for treatment
I have nerve damage and the leaflet says injections every other day until no noticeable improvement then review
Today I had a brief discussion with my GP on how little research was going on into how B12 actually works and we both agreed it was because the drug companies were not interested in funding research because there was nothing in it for them
I know of one research doctor who worked on B12 all his life until he retired, in his 80's and because B12 is so complicated, he only brushed the surface
I hope you can persuade your GP, with the help of info here, to prescribe B12 at the intervals you require as I did.
Personally I think it is probably a bit short sighted of the pharma companies - the margins on B12 may be small but the potential demand is enormous and could add up to big money but then, there's nowt as daft as folk.
Maybe it's because of the expensive and inconclusive testing leading to difficult diagnosis rather than the cost of the actual treatment? I'm thinking there's first 'proving' you have a deficiency, providing clinical evidence it's causing your symptoms (and side stepping the depression diagnosis), and then there appear to be several possible causes from a few different genetic issues related to cellular processing, gastric absorption, other conditions causing malabsorption, such as low thyroid affecting the gut (also apparently has inaccurate tests for many), coeliac disease, poor diet, gut infections, medication, then there are other conditions such as CFS/ME which B12 can help - and so on. Plus with severe symptoms and "normal" serum levels they might want to rule out other conditions such as MS/Alzheimers.
I don't know. I'm just guessing. But it seems to me at the moment the diagnosis is not straightforward and this might be part of the problem due to the time and expense of testing. Although the fact that there ARE so many causes of B12 Def should mean that Drs ought to be hyper aware of it in all its manifestations. And maybe it needs its own specialists, as it doesn't seem to fit one category of specialism.
Re. Ruling out other conditions first - that is part of the problem. In the case of Altzheimer's, time is wasted waiting for MRIs, referring to memory clinics, etc., while, catastrophically, the short time available before damage is permanent slips away.
As quoted by a doctor in the US, they were taught in medical school, "When you hear hoof beats, look for horses, not zebras".
Thank you and I am pleased for you. I will of course try and persuade my GP. What scares me, not only for myself but others in same situation is why do I have to persuade my GP that I am telling the truth, I didn't self diagnose or self prescribe anything, it is so easy for a GP/surgery to contact hospital concerned and enquire as to what was prescribed by an expert so why don't they? I'm not unappreciative of you comments or sympathies I promise but I am overdue for my B12 & I'm angry at 'policies' and lack/laziness of care and scared because it's detrimental to us all. Old age is bad enough without having to battle for a cheap yet vital vitamin that only they can provide you with.
Best wishes. x
The problems is that most of the experts at the hospital are not clued up either. I am under a neurologist because of the nerve damage which means my right leg does not work properly, Even he to date refuses to believe it is all down to B12. Fortunately my GP does believe me and I have been in weekly injections, I could have had them every other day but did not feel I needed them. I now have movement every day for some of the day and for the past 3 weeks have had movement for 4 days each week without a break. I have kept of log of pain, movement etc and intend showing it to my neurologist when I see him at the end of the month
My frustration is that their ignorance means the NHS have not only paid for numerous blood tests but also 5 MRI scans, lumbar punctures,
Nerve conduction tests and X rays etc, without finding anything apart from where the messages get blocked in my spinal chord
I still have no idea if I have PA, conflicting blood tests but I do know the only way I can describe my leg switching on and off when I have B12 injections is that is like a battery running out, recharging, and working again.
What no-one can tell me is why!
I am so sorry. What a scary world we live in. No one takes duty of care seriously anymore, as if we should be reminded!
kind regards. x
My gp still won't refer me... grrr
I battled to get sooner than 12 weekly stabs. No joy. I diy now, feeling much better although my neurological symptoms will never go.
Too late for them, pins and needles are much less still there though 😯
keep on fighting folks!
This is a brilliant improvement- well done!
You must be Wales or Scotland?
In England we don't get it on prescription.
You are very lucky wherever you are
Actually Sue I am in Gloucestershire!!!. I will try and scan the info which comes with the B12 and post it here so everyone can use it to show their GP's
Susie
Thank you for posting this Susie - really encouraging to hear - I wonder if this is general.....
Echotango, I know it's cold comfort, but the situation is no better in Israel, the US and most of Europe. I do believe however, that no amount of lobbying or sweeping acts of Congress will evoke anything more than a yawn from John Q. Public...
"Progress" can only come about by starting at the grass roots level; by putting our pain and shame aside and boldly sharing our personal stories with the local community ; educating one person at a time. Here's how one woman in my own community did this very effectively: about a month ago this woman who had secretly battled breast cancer for years and was now facing a second round of chemo, decided it was time to break the silence. She advertised in the local on-line newsletter that the community is invited to a "parlor meeting" at her home where she will present an informational evening about breast cancer treatment and prevention and share her personal story.
What can I tell you? Everybody was stunned to read that ad...but we all came - the place was packed. The first part of the evening she revealed ALL the gory details of her illness (which came as a complete shock to most ). For the second part she showed a Power Point presentation with statistics and photographs which really drove home the importance of breast cancer screening, especially for BRCA gene carriers like herself. It really took a lot of guts for this lady to go public with her devastating illness, but it was an evening none of us will forget.
Granted, this approach isn't for everyone. Another powerful strategy is again, utilize your online church or community newsletter to tell your story together with a link directly to Sally Pacholok's incredible new book, "What's Wrong With My Child?" on Amazon.com. amazon.com/dp/B00U8LGUHI/re...
Here's the blurb on Amazon:
"What's Wrong with My Child?" is the only book for parents that offers a complete guide to detecting and preventing pediatric disorders caused by B12 deficiency. Written by Sally Pacholok and Dr. Jeffrey Stuart, authors of the acclaimed "Could It Be B12?", "What's Wrong with My Child?" offers parents critical information about protecting children from B12 deficiency from early fetal development through adolescence. Written in a highly accessible style that makes complex medical information clear to general readers, "What's Wrong with My Child?" presents strategies for healthy nutrition for mothers during pregnancy and breastfeeding, early intervention for infants and young children, and detecting subtle to severe symptoms of B12 deficiency in older children and teenagers, the warning signs of childhood B12deficiency and prevent serious injury with timely intervention,and effective treatment."
I tried this on my own community newsletter and it was a HUGE success. It's only effective however, if the newsletter allows you to post images. When you see the cover of her book, the publisher's blurb AND a personal story, it's pretty darn hard NOT to click on that link to Amazon! 
15 year old granddaughter 
Butec 5
