Burning sensations

[Coonass1]

Does anyone get predominantly burning sensations all over the body? I get them in my legs, arms and back. I was taking injections every week but my doctor thinks that is too much. I am currently lasting 3 weeks before the burning sensations return. I can tell the symptoms are returning because I am really tired the day before the burning sensations start.

[lucldh]

I have been diagnosed with severe B12 deficiency a month ago. My B12 level was 95 pmol/l and Active B12 level was 18 pmol/l.

In my case, the right side of the body is affected. I have burning sensations in my right wrist, elbow and knee after 5-6 days since my last shot. My right hand and fingers also move very slowly after 5-6 days since the last shot.

After having first 3 injections at a gap of 5 days each, my GP has advised me to take B12 shot every fortnight or month. I feel like having a B12 shot every week at least.

I also have same question regarding how frequently I can have B12 injections.

[Sleepybunny]

Hi,

When I read your post my first thought was are you getting enough B12?

Some people on forum need far more than is recommended in national guidelines.

Second thought was is there any other condition that might be leading to burning sensations?

Burning sensations are often associated with neuropathy (nerve damage) and there are many conditons in addition to B12 deficiency that can lead to neuropathy.

Have you had tests for

PA (Pernicious Anaemia)

Coeliac disease

Diabetes

Thyroid Disease?

Referrals

Have you been referred to a neurologist?

A haematologist?

In UK, guidelines suggest GPs should seek advice from a haematologist for patients with B12 deficiency with neurological symptoms.

B12 websites

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...

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 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...

I am not medically trained.

[waveylines]

Burning sensations are a neurological symptom and the guidelines recommend alternate days of b12 injections until no further improvement. (That can mean years) Your GP is misguided saying you are having too many injections its the opposite! I would contact the PA Society helpline as they can help you get this resolved. Its important its tackled to avoid any long term damage.

I too have neurological symptoms and have daily jabs as if I dont my tremor increases. I self administer my jabs subcut.

There is no known b12 toxicity this is because your body will excrete out any excess.

[lucldh in reply to waveylines]

Hi, I have also been recently diagnosed with sever B12 deficiency and have slight tremor in my right hand when I open or close my fist. Do you have tremor on both sides or just one side? Also, does your tremor affect your typing speed?

[Gunj_redjem in reply to waveylines]

Can u pls give PA contact number as I live in India I can’t contact their number

[waveylines in reply to Gunj_redjem]

Ah I am sorry I didnt realise that. Maybe you are best to go on their website and have a look.

pernicious-anaemia-society....

[deniseinmilden]

Symptoms are your body's way of telling you that something is wrong and needs fixing.

If you need more B12 then you need it!

While you probably don't need them that often, many of us need daily jabs and quite a lot do two jabs a day. Like so many Drs, yours just doesn't know what the guidelines they should be following say and is giving you misinformation.

[Coonass1]

How about leg cramps? Does anyone get cramps also with the burning sensations?

[Coonass1]

Does anyone get leg cramps