ALS or Pernicious Anemia

[lavada12]

My mother was diagnose with ALS and died Sep 1997. I was diagnose with Pernicious Anemia 6 months ago. Could she have been misdiagnosed with ALS.

[JanD236]

I’m not familiar with ALS but it may be worth checking the symptoms your mum had against the list of PA symptoms (see PAS website).

Also to consider, is there a specific diagnostic test for ALS which would have confirmed that diagnosis?

[fbirder]

ALS is better known as motor neurone disease.

Some of the very early symptoms of MND may be slightly similar to the symptoms of a B12 deficiency. But they soon get much, much worse until the diagnosis should be beyond doubt.

If you have those early neurological symptoms go see a neurologist.

[Sleepybunny]

Hi,

A few links that might be of interest.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Symptoms of Peripheral Neuropathy

nhs.uk/conditions/periphera...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Overseas members can use online contact form.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Article about B12 deficiency from Mayo Clinic in US.

ncbi.nlm.nih.gov/pmc/articl...

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS leaflet about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Films about B12 deficiency

b12deficiency.info/films/

Articles about ALS and B12 deficiency

(Aimed at researchers and health professionals and may contain upsetting details)

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

Articles about difficulties in diagnosing ALS/MND

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

I am not medically trained.

[Litatamon]

I am making assumptions here, but just want to say that I fully understand the pain of looking back and wondering.

My mother had almost two decades of dementia, which started with foot drops and falls in the early years.

I looked after her for many years, but three years full time when all physical and cognitive abilities had left her. It is agonizing to wonder, because my pernicious anemia became clear through foot drops, falls and cognitive issues - including memory and word finding.

Looking back this had already started while she was alive and was diagnosed in me just two years after her death. Of course through my intuition, not a doctor finding it on their own.

Not to mention to mother's dementia never played out like many others.

So hard lavada12. I try not to even go there in my head. And I attempt to educate health professionals when I can, hoping to save another's frustration and health.

[Dexy123]

I understand your concern. My grandma died of MND when I was a teenager. Since then my estranged aunt was diagnosed with b12d years ago (which was thought to be dietary) but I’m now skeptical about this because I was diagnosed with b12d which really don’t believe is dietary as I’m not vegan/vegetarian and have a good diet. I don’t think there is a specific test for MND and it worries me that it is difficult for PA to get their condition recognised generally, never mind it being potentially mis-diagnosed as other conditions. Sorry this doesn’t offer any reassurance other than that this is a thought that has worried me and so you are not alone.

[Emmers5]

I understand your frustration. I also wish I could go back in time and test my father for PA. Irrational and unpleasant behavior, physical troubles, and much suffering by him and our family. Many very specific symptoms that now I believe may have been PA. Tough to mourn what might have been had he been diagnosed.