Hi. I was diagnosed with PA about 2 years ago. I had a blood test for something unrelated to PA, but that was Dr's diagnosis.
So, been taking the B12 injections every 3 months. But, neither when I was diagnosed, or since then have I experienced ANY of the many serious symptoms/concerns/ worries that I see on this site. Am I an exception? Are there 'mild' forms of PA? Am I just lucky?
I was only diagnosed with PA a few months ago when the doctor did a blood test after I was plagued with ulcers in my tongue.Looking back, I remember feeling tired but at the time I put this down to old age. I have only had the six loading jabs but I feel less tired than before the diagnosis.
Scientist's perspective, not a medic.
It looks and sounds like you're one of the lucky ones who have been found before things developed too much. As a consequence, you've avoided a lot of the things we read about on here. It doesn't mean you have a 'mild case', just that you've been detected early and started treatment before too much has gone awry.
If you hadn't been treated at the time then it's likely you would have been far worse by now.
Stick with the treatment and be grateful that your doctor spotted this. Stay lucky!
I was very young when i was diagnosed (in my 20s) and, thanks God, i've never felt many symptoms mentioned by the users in this forum. As I want to keep things this way, i never miss my jabs!! Don't miss yours!! ((Hugs))
This is very interesting. How were you diagnosed with PA - via low Serum B12 and positive IFAB and any of the tests like Active B12 etc that you can’t get from the NHS?
I wonder whether Pernicious Anaemia would be better named as insidious anaemia. Doctors don’t routinely do B12 tests so it’s quite possible to have low B12 without realising it. I wonder whether the serious neurological symptoms of B12 deficiency (chronic fatigue etc) develop after you have had years of low and lowering B12 levels.
It would be very interesting to survey members of the forum looking for people who have had a formal diagnosis of PA via IFAB etc or Schilling test but don’t have the classic symptoms of PA.
It would also be interesting to find how many people knew they had low B12 before they developed PA.
The NIHR can’t do this kind of research because there is no national patient records system. They are only a few countries in the world (mainly in Europe) that have national patient records systems and sadly Britain isn’t one - this is the main reason why clinical trials are so expensive.
The PA Society is going down the route of talking to the James Lind Allliance - I hope that this doesn’t result in lots of wasted tax payers money.
The best place to do research into PA is with the members of this forum. Aside from talking to people with first hand experience of the disease, if you did an analysis of the qualifications and expertise of the people in this forum, you would find a very wide range of skills varying from lecturers in chemistry and data scientists.
It’s a pity that the PA Society is blocking this.
Hi,
I suspect you've been caught early before any serious symptoms have developed.
You may find it helpful to keep a diary to note down anything that you feel has changed after treatment has started.
You may find after a few months of treatment that you have a lot more energy or you can do more exercise or your hearing has improved etc
What I'm trying to say is that you may have symptoms without realising it and due to being over 60 there may be things you put down to getting older when it might be due to B12 deficiency.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed.
b12deficiency.info/what-to-...
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
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).
BNF treatment info in above book is out of date.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
I have written some very detailed replies on other threads on forum which might be worth searching for if you want more info.
Regarding Martyn Hooper's book, you mentioned that "BNF treatment info in above book is out of date".
Can you recommend a current source for information on treatment for B12 deficiency?
Suspected Pa , symptoms question
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How likely is it I have PA
Is muscular pain and stiffness a symptom of PA?
