His serum B12 was 88 and MCV was elevated for quite some time - his case really shouldn't have gotten to the point it did - a clear failure of primary care here. This wasn't even a complex case, for example lacking anaemia or a functional deficiency, so there seems really no excuse for not catching that via a regular B12 serum downtrend over time along with MCV.
If GP's cannot even catch the most clear and straighforward cases before SACD occurs, what chance to catch those with more subtle dysfunctions
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Technoid
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Nothing surprises me, the lack of care is simply abysmal.
Need we say more when there are thousands of us on this site who are suffering the ill effect of insufficient treatment for such a simple treatable complaint !
More funding
More research
More nutritional training.
More education and
annual blood screening should be carried out routinely.
This has all the features of someone sitting on a level crossing, watching the train coming down the track, and not doing anything.
If the poor soul had had an increased MCV for a long time, then surely that should have triggered a medical intervention before the spinal cord problem.
It makes me think 'Where there's blame, there's a claim'! Only by getting folks to defend their actions [or lack of them] is anything going to improve.
It's not as if Subacute Combined Degeneration is a new finding in the spectrum of B12 deficiency problems, after all.
My guess would be neurology. But the nerve damage in my hands was put down to "essential tremor" by a neurologist (on-sight diagnosis). I think this is the equivalent in neurology of fibromyalgia. I'm not of an age where tremor would manifest "out of nowhere" (if indeed it ever does).
I was told it would get worse with time. It didnt, it got better with enough B12.
Also the idea that nerve pain in your hands that feels like grabbing an electric fence would be completely unrelated to a hand tremor takes a high degree of tortured mental gymnastics.
I did not find neurology to be any more educated on B12 issues than primary care.
Agreed - I’m sure some neurologists are great but mine was awful. Rude and dismissive, and his workspace was dirty and messy. I cringed when I saw him trying to find something under the machine that does the nerve conduction study and it came out covered in fluff and grime.
Personal and professional habits aside, he scoffed at my query about B12 and refused to do the small fibre nerve test. The only reason I’m going back to him is because he ordered a brain/spine MRI and other blood tests, and I want the results.
SACD can occur in people whose serum B12 is within normal range.
Search online for "Turner SACD functional B12 deficiency" to find an article where patient developed SACD despite serum B12 levels being normal range.
Search online for "BMJ sub acute combined degeneration Gardin" to find case report of patient developing SACD due to nitrous oxide and AIG (autoimmune gastritis).
A positive Intrinsic Factor antibody test would be reliant on the antibodies being present at the time of testing, which would be reliant on Intrinsic Factor being present at the time of testing. Maybe he had none left by then.
Besides, they must have been aware that the IFab test is only positive in 40-60% of those with PA. Maybe not.
Martyn Hooper (founder of the Pernicious Anaemia Society) had three IFab tests before getting a positive result. I have had three IFab tests myself, all negative. Wonder if three's the cut-off ? Can't remember asking for them, so maybe someone else was convinced I would come up positive at some point ? So many questions.
You never really know what to wish for, do you ?
I had a lovely neurologist once. Despite confessing to not knowing much about B12 deficiency (bit shocked), he listened, asked relevant intelligent questions, came up with a couple of suggestions and sent me for a brain MRI and nerve testing. Relieved and surprised at the first being "normal" (due to my memory and cognitive problems) and expected the second to show nothing much. He then went on long-term sick leave, which was a shame. One not afraid to explore possibilities, I thought.
I got lucky with a trainee GP at my surgery who agreed to do a B12 serum blood test based on a telephone consult during the height of the pandemic. I’d explained I knew someone with PA and I’d got similar symptoms. My serum result was 81. Thought I was dying. They arranged loading doses in the car park of the surgery. OK the subsequent 3 monthly were obviously inadequate but at least I found the online group and SI after I realised I wasn’t t feeling much better. It’s a lottery and of course it shouldn’t be. Thank god for the trainee GP. He’s probably been corrupted now🤣
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