Any help or advice please I’m new today - Pernicious Anaemi...

Pernicious Anaemia Society

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Any help or advice please I’m new today


I have been suffering for 3 years with severe pain down one side mainly around upper right quadrant I have had several diagnosis but none where conclusive after having 20 or more Endoscopy procedures , a sphincteroctomy and Botox injections to Sphincter of oddi and pancreatic duct stent ,Removal of gall bladder. The only conclusion a lame diagnosis of visceral hyper sensitivity. Basically despite my symptoms of the following

pain that’s debilitating requiring Pain relief of Morphine,amyltriptaline etc.

The pain has been building over a period of about 3 or 4 years previously until an episode that required hospitalisation 3 years ago.

I have also in addition to the pain have no energy I suffer from pins and needles and numbness in hands and feet and lower back on occasions. I started going grey in my twenty’s. I also suffer from bouts of extreme diarrhoea

My family history is my mother is a type 1 diabetic and has been diagnosed with pernicious anaemia

my son is also a type 1 diabetic he was diagnosed at 13 .

I have not been diagnosed with pernicious anaemia yet as I haven’t had much help from my gp previously as a result of lots of tests with no clear diagnosis and now with pain specialist saying i will have to learn to manage the pain and suggests neural pathic block. It’s very distressing

Having just found out that my mum is pernicious anaemia and has vit b12 injections in a conversation today. In fact I haven’t heard of this before today but looking at the symptoms and the fact there is no explanation for my pain and associated symptoms I’m still shocked my mum didn’t mention it sooner it’s only been 3 years I’ve been of work.

I don’t want my Doctor thinking I’m self diagnosing and dismissing my findings.

Suggestions please

Thank you in advance.

6 Replies

Ask your Gp. For a blood test to check your b12 levels.

Have you had it tested before?

Sounds like you've been having a terrible time.

State your symptoms you think are related and say your mum has

PA. Hopefully the doctor will thrn do a blood test for that and folate.

Hope you get on okay.

Thank you for your support and I will ask for the test Evan if to rule it out.

Thanks I’ll keep you posted

Best wishes


Not saying it isn't B12 but in general neurological problems caused by B12 are symmetric (because its affecting processes at the cell level).

B12 may be playing a part - gallbladder surgery is a red flag for potential B12 problems - I suspect there is something else going on that is causing the pain to be asymmetric.

I've read this about symmetrical pain as well. But mine has always been my left side. Foot, hip, leg, shoulder. I've had occasional right side pains but it's mostly been the left...even the numbness has been far more an issue on left side limbs. I'd be more concerned for myself with it being non symmetrical, but the B12 has resolved things, except of course when I don't get enough and I'm reminded with pains and numbness 😉

Gambit62Administrator in reply to Statesideheather

if there was some previous underlying damage that meant you were more prone on the left side ...

I have more issues with my left foot and ankle but that's the result of damage from a fractured ankle and the presence of a pin that iterferes with a tendon.

Mines also been on the left Statesideheather. After nearly 5 months my neurological symptoms have almost gone and I’m hoping to continue on oral B12 if possible. My tinnitus has not resolved, but that’s a small price to pay. I bought lots of B12 injections thinking things would take much longer to improve, but it was worth it to be on the right track.

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