Expertise in Hampshire

[njames50]

I have a friend who has pernicious anaemia, proven by symptoms and blood test results. She has had the condition since birth, and has been bedbound for the last seven years. Is there anyone in the medical profession in Hampshire or nearby who understands the very serious nature of this condition and who we could go to with complete confidence?

[JanD236]

Hopefully someone on here will be able to help but in case not I wonder if the pernicious anaemia society would be able to if your friend is a member?

[deniseinmilden]

Good luck with finding anyone anywhere!

Having found this group you do at least have a fount of knowledge, albeit mostly experienced rather than qualified.

[Sleepybunny]

Hi,

I am not medically trained.

I am sorry to read that your friend is bedbound. I hope she finds the help she needs.

I'd suggest joining and contacting PAS soon. They may be able to pass on useful info and in some cases may be able to intervene on behalf of PAS members who are not getting recommended treatment.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone so messages can be left. May take a few days to get a response to message.

PAS support groups in UK

There is a PAS support group in Hampshire. She would need to be a PAS member to access details of support group. Sometimes people join PAS on behalf of a PA sufferer.

pernicious-anaemia-society....

Support groups can be a useful source of info on helpful doctors etc.

What level of treatment is your friend receiving?

Does she have neuro symptoms eg tingling, pins and needles, numbness, tremors, memory problems, balance issues plus other neuro symptoms?

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

UK B12 treatment

People with B12 deficiency without neuro symptoms

6 B12 loading jabs then a jab every 3 months.

People with B12 deficiency with neuro symptoms

A B12 loading jab every other day for as long as symptoms get better then a jab every 2 months.

UK b12 documents

I'd suggest reading all of these.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

More B12 info in pinned posts on forum including useful summary of B12 documents in third pinned post.

Inadequate treatment can lead to further deterioration including spinal problems.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies.