Pernicious Anemia or ALS

[lavada12]

My mother died from ALS back in the early 90's. I now have been diagnosed with Pernicious Anemia. I wonder if she really had Pernicious Anemia. Don't have her medical records anymore so I can't check to see how her B12 looked or if it was even tested. It haunts me.

[wedgewood]

How I identify with you . I’m convinced that my mother died of Pernicious Anaemia now . Now I know so much more about P.A. and all the various possible symptoms , and know how very ignorant the medical profession is about it , I’m convinced that is what my mother died of . It look such a long time . It was hellish . As you say it is haunting to think of . Yes I have P.A. too ( diagnosed with a positive Intrinsic Factor Antibody test) I had to go privately to get my diagnosis as my GP just sent me on my way with a very low B12 test result . Labelled as a hypochondriac really . . …. Without this society I too would be on my way out . in such a horrible slow way. … I need to inject weekly to keep well , but am left with burning feet which are now irreversible. All for the lack of a cheap vitamin which now we are told can be treated with tablets , which is mostly not possible for many P.A. patients - I know I’ve tried so very hard taking massive doses . . And I’ve tried mouth and nose sprays ,and patches Useless for me Thank God for PAS and its founder Martyn Hooper . And we are left with the haunting knowledge that it’s quite possible that our mothers died of this awful condition . Misunderstood and dismissed . That’s very hard to bear . I feel for you lavada12 .

[ClareP5]

It’s so awful- we now realise our parents both had symptoms of B12 deficiency- never got treated and we had no clue. One sibling was identified as B12 deficient nearly 20 years ago - they assumed she was an alcoholic with no evidence and gave her no treatment or advice🙈

[VellBlue]

It's awful. And you also wonder how many people are still struggling with not getting the diagnosis and help they need. 🌼🌹

[wedgewood in reply to VellBlue]

We really know that many people with the condition are either not getting any treatment or are being under treated . There is hope for them if they have the internet and a device to access it , and the PAS . . But many won’t have this . It worries me a lot .

[VellBlue in reply to wedgewood]

Surely some kind of journalist would be interested in covering this, a little feature for a weekend paper. Some of you have interesting stories, the struggle to get diagnosed, the struggle to get treated, the failure of the medical system, how this little red liquid has changed your life, your concerns about others... can't we find a good journalist and email them suggesting this? We just need a few people willing to be interviewed.

[wedgewood in reply to VellBlue]

It’s such a good idea VellBlue . But we are up against it with the medical profession.

[VellBlue in reply to wedgewood]

Hmmmm... let's see.

[Litatamon]

I am so very sorry lavada. (And Wedgewood, Clare and others that have this burden).

I too have these thoughts. My mother's almost two decades with dementia started with gait changes, foot drops and falls. My b12 deficiency started with gait changes, foot drops and falls (after her death). I looked after her for her last three years full time. And it is damn haunting to think that she could have possibly just needed a b12 shot.

I will never know. And honesty I think it is best that I never know. I actually try to pull my brain back when it goes there. There is nothing but sorrow and rage to be found.

[Sleepybunny]

Hi,

I think there are many on this forum who identify with you and have friends and relatives they are concerned about.

I am convinced my mother had B12 deficiency. Thinking back over her life there were many signs that indicated it was likely. She died with advanced dementia several years ago.

It haunts me too. I did raise the possibility of B12 deficiency with her care home and with the other adults involved in her care and was told her results were within normal range.

From my own experience I know that it is possible to have severe B12 deficiency with serum B12 results that are well within normal range.

PA and B12 deficiency can be misdiagnosed as many other health conditions

b12deficiency.info/misdiagn...

Films about b12 deficiency

b12deficiency.info/films/

One of the ways I cope is to try to spread knowledge about B12 deficiency and PA in the hope that some will avoid what I and my mum went through.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members in other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Two 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 including some elderly patients.

Article about B12 deficiency and Motor Neurone Disease MND ( also known as Amyotrophic Lateral Sclerosis ALS and Lou Gehrig's disease)

Aimed at researchers and medical professionals and may contain upsetting details

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

I am not medically trained.

[wedgewood in reply to Sleepybunny]

It’s GREAT that you are NOT medically trained Sleepybunny ! If you were, you would not be able to help P.A,/B12 deficiency patients. like you do . Thank you for your marvellous posts !

[bookish in reply to Sleepybunny]

Thank you for the ALS/MND article, something I had wondered about having lost a friend. How sad that vitamin D was not tested for the initial patient mentioned and how on earth did they decide that there was no underlying autoimmune condition when later they said PA, having already mentioned hypothyroidism (unspecified). Even if ALS/MND isn't autoimmune (opinions seem to differ) it is immune-mediated. You can't help but wonder about gluten and other common intolerances and what might have been the outcome with vit D and diet. Mum had myelodyplasia and dementia (which killed her) and I am convinced that she had a folate/B12 issue. I found this about PA and myelodysplastic syndrome interesting ncbi.nlm.nih.gov/pmc/articl... , including the statement

"it is important to consider that patients with anti-intrinsic factor antibodies can have falsely elevated B12 levels due to the autoantibodies’ ability to interfere with the test reagents".

Best wishes