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?
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Rebecca85
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"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.
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
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