Could my nerve pains be B12 related - Pernicious Anaemi...

Pernicious Anaemia Society

32,623 members23,985 posts

Could my nerve pains be B12 related

Rebecca85 profile image
5 Replies

Hi, I am really getting down about this. I have been on B12 injections 12 wkly for years for low B12 but was tested and told I do not have pernicious anaemia. There is family history though as my grandmother did have it.

Anyway my problem is numbness, pain and pins and needles to both hands and feet. This has got progressively worse over 10 years and I am now struggling to cope. I have seen a neurologist who after nerve conduction tests and MRI told me she did not know the cause and discharged me. I am being treated on medication (gabapentin) which is not helping. I do feel symptoms are worse leading up to an injection, my last level was high at 1580 back in January but this was done 2 weeks post injection. I am considering self medicating B12 but the neurologist advised against it. Any ideas?

Written by
Rebecca85 profile image
Rebecca85
To view profiles and participate in discussions please or .
Read more about...
5 Replies
Sleepybunny profile image
Sleepybunny

Are you in the UK? I've assumed you are.

I found it helpful to ring the PAS.

pernicious-anaemia-society.... 01656 769467

"but was tested and told I do not have pernicious anaemia."

Patients who test negative on IFA tests can still have PA.

The "BCSH Cobalamin and Folate Guidelines" which came out in 2014 state that it is possible to have antibody negative pernicious anaemia. If you google this document it's long but worth reading. I found page 29 useful, it's a diagnosis flowchart and mentions antibody negative PA. Martyn Hooper, the chairman of the PAS tested negative on more than one occasion on the IFA (Intrinsic Factor Antibody) test.

Recent articles make it clear that patients who are symptomatic for B12 deficiency should be treated even if blood tests are normal range or negative.

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

b12deficiency.info/

b12d.org

I posted a lot of info on romulusandremus thread "B12 Injections"

There may be something useful there.

Rebecca85 profile image
Rebecca85 in reply toSleepybunny

Thank you Sleepybunny I am in the UK. I will look through the links thanks x

Sleepybunny profile image
Sleepybunny in reply toRebecca85

One thing I found out was that some medications affect the uptake of B12.

b12deficiency.info/what-are...

pharmacologyweekly.com/arti...

I found some articles that linked epileptic drugs with B12 deficiency

ncbi.nlm.nih.gov/pubmed/212...

Have you ever had surgery involving nitrous oxide?

Gas and air given to women in labour contains nitrous oxide.

gov.uk/.../nitrous-oxide-ne......

martynhooper.com/

A recent post on the blog mentions nitrous oxide.

Sleepybunny profile image
Sleepybunny in reply toSleepybunny

Whoops gov.uk link not working. Hopefully this does.

gov.uk/drug-safety-update/n...

Rebecca85 profile image
Rebecca85

I am diagnosed with autoimmune condition sicca syndrome so could be related to that. I think I may just ring PAS as you suggest. I seem to have already done a lot of reading. It's knowing where to turn next! Thank you x

Not what you're looking for?

You may also like...

Could it be low vit b12?

Hi everyone i was wondering if i could have some advice. Im a 24 year old female, back when i was...
Clareb12 profile image

Could this be B12

I've been back and forward to the Gp for a good few years complaining of fatigue and brain fog. I...
Steap profile image

Could it be b12?

Hi I have been having health problems last few years. I'm hypothyroid and have terrible digestive...
Nanny23 profile image

Could b12 deficiency be my problem?

Hi. Thank you for the add. I'd like to share my story with you to see whether you think I am...
charlianne profile image

GP stopping my B12 injections. Replacing with oral B12

Hi. At my last appointment for my B12 injection, the nurse explained that new research had revealed...
Holly2201 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.