Neurologist

[Pete-saus1]

Hello. All. I'm a 35 year old bloke who's been diagnosed with prenisious anemia.. my doctor is brilliant and is helping me as much as she can. I was having my injection every 2 months which helped and I'mdoing ok. But now I'm not allowed to have my injection every 2 months until I've seen the neurologist. I'm really suffering with balence and my right hand shakes a lot. I'm 99.9% sure it's a neurological problem. I've got an appointment on the 9th. Does anyone know what tests or anything that will do?

[Sleepybunny]

Hi,

"But now I'm not allowed to have my injection every 2 months until I've seen the neurologist."

Are you still having injections or have they stopped them totally?

If you're still having injections, how often are they giving them to you now?

PA treatment is for life and should never be stopped.

Have you considered joining and talking to PAS (Pernicious Anaemia Society)?

They can sometimes intervene on behalf of their members and at very least can pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

I'm assuming you're in UK. Treatment for B12 deficiency varies from country to country.

In UK, doctors usually refer to the BNF (British National Formulary) for guidance on treatment.

BNF advice on treatment for B12 deficiency was changed recently. See PAS news item below.

pernicious-anaemia-society....

I don't know why they won't allow you to have injections every 2 months as BNF now suggests maintenance B12 jabs every 2 or 3 months if no neuro symptoms present.

If neuro symptoms present eg tingling, pins and needles, tremors, restless legs, tinnitus, memory problems, balance problems, word finding difficulties, brainfog plus others then recommended UK treatment is

A B12 loading jab every other day for as long as symptoms continue to get better (could mean weeks even months of every other day jabs) then a jab every 2 months.

Do you have or did you have any neuro symptoms before treatment started? Balance issues would usually be considered as neurological.

How many loading jabs did you have at start of treatment?

In UK, if no neuro symptoms then it's 6 loading jabs over 2 weeks at start of treatment .

If neuro symptoms present then it's every other day loading jabs until symptoms stop improving.

UK B12 documents

If you're in UK, I suggest reading all of these documents below.

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...

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 does not mention recent BNF change.

"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

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. Lots of useful B12 info in above link.

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/

It could be that the doctor wants neurologist to exclude possibility of other neurological conditions.

I would add that B12 deficiency can sometimes mimic symptoms of other neurological conditions eg MS, Parkinsons, Dementia and other neuro conditions.

b12deficiency.info/misdiagn...

Do you have someone supportive you can take with you? Even better if they have read about PA and B12 deficiency.

Consequences

There can be severe consequences of untreated or under treated B12 deficiency. I hope your GP is aware of this.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

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

pernicious-anaemia-society....

One neuro symptom that can be associated with B12 deficiency is problems with proprioception sense (awareness of body in space). Is neurologist going to test this?

Two neuro tests that check proprioception are

1) romberg test

2) walking heel to toe with eyes closed

These tests should only be carried out by a doctor at medical premises due to risk of falling. Videos of these tests on Youtube.

Blog post from Martyn Hooper's blog, mentions SACD

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

Help for GPs

1) PAS website has section for health professionals.

If your GP wants to help you as much as he can then perhaps he could read this .

He can join PAS for free as an associate member.

pernicious-anaemia-society....

2) PAS library section on website has useful leaflets/articles that some forum members pass on to GP eg

"An Update for Medical Professionals: Diagnosis and Treatment"

"Treatment is for life"

pernicious-anaemia-society....

3) I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency"

I am not medically trained.

[Gambit62 Administrator]

Pete - are you in australia? - if so then injectable B12 is available as an over the counter medication in Australia though sometimes the pharmacy isn't aware of this.

The neurologist will look into other possible causes of the problems you are having - probably do a lot of balance and co-ordination tests and will probably take bloods.

Neurological problems can arise from a number of conditions and having PA doesn't rule out two things going on. It is possible that the neuro may not be very aware of B12 and its role in neurological problems but hope that they are.

[fbirder]

As Sleepybunny says, you can now have 2-monthly jabs even if you don't have neurological symptoms.

Having said that, your doctor still has no excuse for stopping your 2-monthly jabs until a neurologist says your symptoms are caused by B12d. A good doctor would have carried on until the neurologist said the symptoms weren't caused by B12d.

Your neurologist will do various tests to try to ascertain the cause of your problems. They may be because of your B12 deficiency, they may not. They will take some bloods, do a proper physical examination, do nerve conduction tests, electromyograms, test reflexes, etc.