Pernicious Anaemia Society
15,938 members11,165 posts

A small victory!

Thanks to the P.A.S.! I have been able to educate a dear, ill friend about b12d. His health has been deteriorating badly for 2-3 years, he has almost every symptom of the deficiency and was fading away. He has seen Neurologists and had an MRI scan but got nowhere. I am b12d myself and I passed on all my knowledge and nagged him to ask for tests. After months of doctors treating him like a pain in the wotsit, a Neurologist ordered the relevant tests and guess what! His levels are worryingly low. He is now being referred to a Haematologist, who will probably be surprised that with levels so low my friend is still alive! He is now grateful for my nagging and I, in turn, am grateful to the P.A.S. for the knowledge I have gained. The outlook is now a little brighter!

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Glad to hear your friend has found a possible cause for his health issues and that you were able to help him.

Hope the neurologist has ordered an IFA Intrinsic Factor Antibody test which can help to diagnose PA.

IFA test is not always reliable and it is still possible to have PA even if IFA test result is negative.

If PA (Pernicious Anaemia) is suspected then may be worth him joining PAS (Pernicious Anaemia Society).

PAS

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone so messages can be left

If your friend is in UK, might be worth him reading

1) BSH Cobalamin and Folate Guidelines.

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines outlines process for diagnosis of PA.

stichtingb12tekort.nl/weten...

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of MIsdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

I am not medically trained just someone who has struggled to get a diagnosis.

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