Hello everyone
I've just joined this forum and am on a mission to tell our family's story in the hope that it will make others aware of how dementia can be misdiagnosed. It's difficult to know where to start, as our struggle lasted months so this is the short version!
My relative's memory had been poor for a year or so but, after a serious crisis, her GP ruled out Altzeimer's and settled on a diagnosis of ME and dementia. No case history had been taken even though we'd pointed out that there had been a huge decline following dental injections, (nitrous oxide in anaesthetic and dental injections seriously depletes B12 as do many other medications). I began to research PA and B12 deficiency extensively but was unable to convince the surgery to consider B12 deficiency even though relative showed many symptomatic neurological problems, which are irreversible if not treated urgently.
After weeks of frustration, I emailed the guidelines below, care of the practice manager. Eventually, and only after I'd pointed out the social consequences on the whole family, did they agree to trial injections.
Huge improvements followed, which enabled my relative to function normally again and to ask for more frequent injections herself, which they eventually agreed. Memory is still poor and may not ever be fully reversed but we are still hoping that it will come back with time and sufficient vitamin B12 injections.
I realise this may not work for everyone but there will still be many people who are being misdiagnosed and therefore not treated.
Recommendation in BCSH, UKNEQAS and NICE guidelines:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
Re. tests, here is an extract on test results from the book, "Could it be B12?" :
"we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml.
I've just joined this forum and am on a mission to tell our family's story in the hope that it will make others aware of how dementia can be misdiagnosed. It's difficult to know where to start, as our struggle lasted months so this is the short version!
My relative's memory had been poor for a year or so but, after a serious crisis, her GP ruled out Altzeimer's and settled on a diagnosis of ME and dementia. No case history had been taken even though we'd pointed out that there had been a huge decline following dental injections, (nitrous oxide in anaesthetic and dental injections seriously depletes B12 as do many other medications). I began to research PA and B12 deficiency extensively but was unable to convince the surgery to consider B12 deficiency even though relative showed many symptomatic neurological problems, which are irreversible if not treated urgently.
After weeks of frustration, I emailed the guidelines below, care of the practice manager. Eventually, and only after I'd pointed out the social consequences on the whole family, did they agree to trial injections.
Huge improvements followed, which enabled my relative to function normally again and to ask for more frequent injections herself, which they eventually agreed. Memory is still poor and may not ever be fully reversed but we are still hoping that it will come back with time and sufficient vitamin B12 injections.
I realise this may not work for everyone but there will still be many people who are being misdiagnosed and therefore not treated.
Recommendation in BCSH, UKNEQAS and NICE guidelines:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
Re. tests, here is an extract on test results from the book, "Could it be B12?" :
"we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml.
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