B12 neurological symptoms

What symptoms of B12 deficiency are defined as 'neurological' as opposed to physical?

[fbirder]

All you need to know about symptoms - pernicious-anaemia-society....

Neurological Symptoms

Balance Problems

Dizziness/Feeling Faint

Numbness/Tingling/Pins and Needles

Burning Legs and/or Feet

Neuropathic Pain/Fibromyalgia

Vertigo

Tinnitus

Sensory Impairment

[Hidden in reply to fbirder]

thanks will have to fight doctor again

[Sleepybunny]

Hi,

Another link about B12 deficiency symptoms...

b12deficiency.info/signs-an...

Other neuro symptoms I have experienced which I don't think are mentioned in above list are

migraine

restless legs syndrome

periodic limb movements

muscle twitching/fasciculation

some dystonia type symptoms

word finding difficulties

problems with proprioception sense (awareness of body in space)

I do not have a PA diagnosis but at worst had many typical symptoms of b12 deficiency. Many of my neuro symptoms disappeared or improved when I finally got B12.

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

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

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 show updated BNF info.

"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".

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Have you been tested for PA?

Coeliac disease?

Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac.

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

H Pylori infection?

patient.info/digestive-heal...

Any exposure to nitrous oxide?

gov.uk/drug-safety-update/n...

Any chance of internal parasites eg fish tapeworm?

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

"will have to fight doctor again"

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link 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/

I am not medically trained.

[Gunj_redjem in reply to Sleepybunny]

Are ur migraines gone.. how much time did treatment of b12 take for migraine? Did u have any medicine for migraines also?

[Sleepybunny in reply to Gunj_redjem]

Hi,

Sadly migraine seems to one symptom I am stuck with.

I did try some commonly prescribed migraine medicines, some of which I think are also used for epilepsy but GPs were unhelpful in following through suggestions from neurologist and in the end I decided I could live with the symptoms.

Some anti epileptic drugs can be associated with Folate and B12 deficiency.

[Gunj_redjem in reply to Sleepybunny]

For how long hav u been on injections? How often do u tke

[CaptainHypochondriac]

I've been suffering from muscle fasciculations and muscle pain for months now. Started with minor twitching a year or two ago and then after a bad fever, fasciculations all over and random pain. Took many visits to the GP and neurologists who insisted my issue was psychological before finally convincing one of them to give me a B12 test. Results were 235 pg/ml which is near the bottom of normal range. Decided to try on my own the 1000mcg B12 supplement and my symptoms are 70-80% improved now.