Definition of PA

[silvergirl]

My nuero has sent me a letter stating that I do not have PA as I was never anemic and that the intrinsic factor test my GP took was not proof of PA ( though she says I do have PA) , yet he admits that I have b12 def with irreversible nuero damage so severe that he initially dx it as a combination of MS and Ataxia. Is there a definitive description of PA any where as I am totally confused. It seems that without it you are just dismissed as a hypochondriac and I am exhausted at having to constantly explain myself. Sorry bad day.

[Gambit62 Administrator]

this is the page the PAS uses to explain exactly what PA is

pernicious-anaemia-society....

it is an auto-immune disorder in which the body attacks the mechanisms by which B12 is absorbed in the ileum. Anaemia is an historic misnomer as it was first identified as a condition - long before the cause of the symptoms was understood - as a type of anaemia that lead to neurological problems and death - which is where the Pernicious comes from.

sad but true that many medics who have specialised have a very poor grasp of anything outside their specialist area. I remember last year being rather gob-smacked when I challenged a gyaenocologist after she had written down on a form that my mother was type 2 diabetic when my mother is infact MODY diabetic. The doctor said that MODY was type 2 - which I knew it wasn't but ... there wasn't really much point in arguing as she wouldn't have been prepared to listen or learn from her mistake, and it wasn't relevant to my mothers treatment. I did manage to get the record corrected later speaking to a nurse who had been a diabetic specialist.

[silvergirl in reply to Gambit62]

Many thanks for the reply, It is so frustrating. Medics can be so arrogant and dismissive the condition does indeed need clarification as it wanders over so many levels of severity. When I was told I was B12 def I thought great a few injections and it will be sorted I never thought that It would trash my life and turn me into an old woman who can't walk in a straight line or hold a conversation without stopping to think. At least the tremor has stopped though the rumors of me being an alcoholic will never die. Folk can be so cruel and so dismissive that a simply vitamin def can trash your world.

[Gambit62 Administrator in reply to silvergirl]

unless you have lived through it understanding how much B12 affects you can be really difficult. I was diagnosed a few years ago after a fall. I'd suffered depression for 40+ years so thought the two couldn't be connnected but actually after a few months of treating myself with the levels of B12 I needed I noticed it had gone but if you haven't experienced that it's difficult to understand.

Sorry to hear about the assumptions people have made about you. It is unfortunate that people jump to these conclusions - there are a lot of conditions that will look like drunkness but its rare to find someone who doesn't just dismiss it at first sight

[fbirder]

the intrinsic factor test my GP took was not proof of PA

No, it's not proof of PA. But it's a good (95%) indicator of the condition. couple it with a B12 deficiency and I'd say it's about 99.99% certain. Not 100% proof - but better than any other diagnosis he'll ever make.

[Sleepybunny]

"nuero has sent me a letter stating that I do not have PA as I was never anemic"

Have a look at the summary fbirder compiled. link to summary in third pinned post.

There is a section in summary about haematological changes in PA. Some useful quotes that might help the neurologist including one that mentions anaemia does not always happen in PA.