As you are probably aware, over the last nine months I have been concentrating on collecting evidence that will prove that there are serious issues surrounding the Diagnosis and Treatment of Pernicious Anaemia. A quick visit to the Forum of the society’s website proves that these serious issues exist, but as medical professionals are not going to take the posts of members as hard evidence I set up an online Survey using Surveymonkey. A GP who is a member of the society and sufferer devised the survey and is now analysing the results. Nearly 420 members have completed it and it is revealing some frightening statistics. Nearly 64% of Respondents reported that they waited over two years to be correctly diagnosed with 55% of members having been diagnosed with some other 
medical condition before finally being told they had Pernicious Anaemia. Another source of evidence will be the documentary which will highlight the contradictions and anomalies of the diagnosis and treatment of Pernicious Anaemia – what has been captured on film is a level of misunderstanding among medical professionals that will cause many jaws to drop.
There is a question on the Survey that asks respondents to divulge what they were originally diagnosed as having if their correct diagnosis was delayed. By far the most common misdiagnosis was ‘Depression’ but there have been some very exotic diagnoses as well. Some of these are quite funny – or rather they would be funny if you can forget that the patient would be suffering needlessly when he or she received the wrong diagnosis. Here are a sample of what our members were told:
“I don’t think you are mad or anything – but I think it’s your mood”
“It’s probably the menopause” – the member was only 32 .
“Pre Menstrual Tension”
“It’s all in your head” – this is a common one as well.
“Probably an alergy to the air”
“Variety of symptoms unexplained over time, except for my peripheral neuropathy which was attributed to my (perfectly good) shoes – at this point I went privately to a neurologist. Eventually B12 measured: 62!”
“Hypochondria”
“Probably a virus”
“Alcoholism”
“Psychosomatic Oral Dysesthesia”
“Emotional Problems”
” Depression, and or , being female”
“A stomach bug and later, depression”
“Fungal infection of tongue – instead of geographic tongue due to B12 def”
“Thought it could be MS, ruled that out with MRI scan -and then told me it was all in my mind!”
“Allergies, Asthma”
“Vertigo/Depression/PolyCystic Ovary Syndrome/Vitamin D Deficiency/Hypochondria (I think that’s about all of the screwy things I was told, but I might have forgotten some)”
And my own particular favourite:
“over 40 and a female – I was going to feel tried!”
As I said previously – these would be funny if they weren’t true and didn’t cause unnecessary suffering.
They keep on coming:
“The problem is that the more B12 you have the more you will want: It’s like heroin.” Practice Manager to a patient yesterday.
“Some people get high on too much B12” – GP to a patient a few days ago.
2/9/11. “You’ll develop nerve problems if you have too much B12”
Hi Martyn I first had VitB12 injections in South Africa
it was used to treat M.E. symptoms and I found them very beneficial. There were other reasons for my doc prescribing them- like ‘enlarged’ red blood cells etc. Since living in the U.K. I have had zero success trying to convince these doctors that it is Very beneficial for brain fog pain sleeping and my symptoms have worsened.
Their reaction was out of proportion to what I was asking – you would have thought I was asking for an illegal drug!!!
It was only after coming across articles on pernicious anaemia that I realised I have almost all the symptoms.
In South Africa you can go into a the pharmacy where I lived (they have a nurse and run a clinic) and get VitB12 injections.
After a lot of stress and resentment incurred trying to get these doctors here in the UK to agree I now buy my own from South Africa and inject myself – that what I have decided – it may not be for everyone
but I feel I have no choice when presented with such ignorance from doctors.
Hi Martyn I first had VitB12 injections in South Africa
it was used to treat M.E. symptoms and I found them very beneficial. There were other reasons for my doc prescribing them- like ‘enlarged’ red blood cells etc. Since living in the U.K. I have had zero success trying to convince these doctors that it is Very beneficial for brain fog pain sleeping and my symptoms have worsened.
Their reaction was out of proportion to what I was asking – you would have thought I was asking for an illegal drug!!!
It was only after coming across articles on pernicious anaemia that I realised I have almost all the symptoms.
In South Africa you can go into a the pharmacy where I lived (they have a nurse and run a clinic) and get VitB12 injections.
After a lot of stress and resentment incurred trying to get these doctors here in the UK to agree I now buy my own from South Africa and inject myself – that what I have decided – it may not be for everyone
but I feel I have no choice when presented with such ignorance from doctors.
In March 1997 I had to give up a job which I enjoyed very much as I was constantly exhausted. By then I had seen four GPs, a Psychiatrist, a Psychologist and a Counsellor. I was told by the various professionals that I was suffering from:- anxiety and depression; M.E; tachycardia; hormonal imbalance; stress; etc.
In 2008 we moved house and I registered with another GP practice. The first doctor prescribed anti-depressants, the second one listened and was more thorough and after blood tests I was finally told I had pernicious anaemia. At last, 11 years on and 6 GPs later!!
For two whole years, life was great again and I hAVE even gone back to work for two days a week. However, my GP has been encouraging me to try to have my Hydroxocobalamin injections every 12 weeks – I had been having them every 6 weeks. I have struggled to go for 10 weeks but now I find that I have pins and needles in my legs again, and on the last two occasions when I visited my GP my blood pressure was quite low.
When I first started treatment I asked my GP if there were any side effects from taking Hydroxocobalamin and he replied “None that I am aware of.”
Having read the various comments on the Pernicious Anaemia Society site, I am amazed how GPs treat patients as statistics rather than human beings who are all different. I appreciate that they are constrained by budgets and have to be mindful of medical research but if the computerised data says the patient is alive and well while the actual patient is lying dead on the surgery floor which would they believe?!!