Pins and needle

[Arranger]

I have had pins and needles in my feet for the past 2 years I saw a neurologist and there is no damage to the nerves I have injections every 3,months. What is causing this? Any treatment ideas.

[Technoid]

If not neurological, circulation could be something else to look at.

I am not a neurologist, nor have any medical training but it seems to me that although local nerves might be fine an issue with a particular spinal location or other area where a nerve is pinched might also cause knock-on issues elsewhere? Just a thought.

[Wwwdot]

Hi Arranger

How horrible for you! I cannot stand pins and needles when I get them from squashing my arm or leg even!! I had pins and needles in my hands until I began every other day B12 injections.

Have you tried increasing the frequency of your B12 injections? Pins and needles are a neurological symptom of B12 deficiency so you may want to consider every other day injections of B12 until symptoms improve as per NICE guidelines.

Hope you find your solution soon.

🤗🤗🤗

[Arranger in reply to Wwwdot]

I have my injections at the doctors and they say I only need it once every 3months.

[wedgewood in reply to Arranger]

Once every 3 months is OK for some patients , but not for many . We are all different, and need different regularity of injections. If inadequately treated , one can be left with irreversible symptoms (Happened to me ) Sleepybunny can give you links that would help you to get information to give to your GP

Failing all that you may like to consider self injecting. If so , you can get information here . It’s what we all on this forum have to do to keep symptoms at bay . You can inject Intramuscularly or subcutaneously ( sub -cut is less intimidating ) Best wishes .

[Peder1962 in reply to Arranger]

Doctors cant tell, its individual. I needit three times a week. Start self inject and see if it helps. You clearly have symptoms, and the recommended (by Mayo Clinic and b12 institut Holland) is the at start twice a week for 6 month - then evaluate. Increase if twice a week is not enough. If all symptoms are gone after 6 month then slowly decrease frequency, but frequency should never be more than once a month.

[Wwwdot]

Hi Arranger

That doesn’t surprise me one jot! What most GPs know about B12D can be written on a postage stamp.

I am sure Sleepybunny can send you a link to the NICE guidelines which you can take to your GP. Fingers crossed they may listen, if not seek the opinions of other GPs.

Unfortunately with B12D you very much have to row your own boat.

🤗🤗🤗

[Sleepybunny]

Hi,

Welcome to the forum. There's lots of support here.

I tend to post a lot of information so might be best to read a bit every day over a week so it's not so overwhelming.

It's possible that some links may have upsetting details.

I'm not medically trained but I suspect you might need B12 injections more often.

You mention neurological symptoms so I would expect you to be on the treatment pattern "For people with neurological impairment" outlined in link below.

cks.nice.org.uk/topics/anae...

This is a B12 loading injection every other day for as long as symptoms continue to improve then a maintenance B12 injection every 2 months.

How many loading injections did you get when treatment started?

Your GP appears to have put you on a treatment pattern aimed at people with B12 deficiency who don't have neurological symptoms.

GP can also find this info about treatment for those with neuro symptoms in their BNF book Chapter 9 Section 1.2 or in online BNF.

BNF Hydroxycobalamin

bnf.nice.org.uk/drugs/hydro...

Click on section "Indications and Dose" then "For Hydroxycobalamin". Read section "Pernicious anaemia and other macrocytic anaemias with neurological involvement".

PAS

Have you considered joining PAS (Pernicious Anaemia Society)?

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

PAS membership is open worldwide and you do not need a confirmed PA diagnosis to join them.

They have a helpline and lots of useful leaflets.

pernicious-anaemia-society....

pernicious-anaemia-society....

There are PAS support groups in UK. They are a good place to swap information.

pernicious-anaemia-society....

Unhappy with treatment?

How to write letters to GPs about B12 deficiency.

Link has letter templates covering various situations linked to B12 deficiency.

Point 1 in above link is about being under treated for B12 deficiency with neurological symptoms.

It's vital to get adequate treatment. Inadequate treatment increases the risk of developing permanent neurological damage. In severe cases the spinal cord can be affected.

If GP is reluctant to put you on treatment pattern "for people with neurological impairment" then may be worth discussing in a letter and face to face the risks of permanent damage if under treated.

Your GP may find next article interesting.

PAS article about SACD, sub acute combined degeneration of the spinal cord.

pernicious-anaemia-society....

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.

healthunlocked.com/pasoc/po...

Symptoms

Does your GP have a list of all your symptoms, including every neuro symptom and definitely mention any symptoms affecting your spinal area?

I used PAS list below and added extra symptoms at bottom of page.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

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.

Folate, Iron, Vitamin D

Have you had recent blood test results for the above? It's quite common for people here to report deficiencies in folate, iron and Vit D.

My advice is to always check blood test results for yourself even if told they are all normal.

Thyroid

It's also common for forum members to also have thyroid issues. Might be worth posting any thyroid results on Thyroid UK forum on HU.

Diabetes

Have you had recent tests for diabetes?

Diabetes can lead to neuropathic symptoms.

NHS link about Diabetes

nhs.uk/conditions/diabetes/

[Sleepybunny in reply to Sleepybunny]

Many of us here have met health professionals who lack understanding of B12 deficiency.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Help for GP

Maybe you could point these links out to your GP.

1) PAS website has a page for health professionals which talks about diagnosis and treatment.

There is no charge for health professionals to join PAS as associate members.

pernicious-anaemia-society....

2) Club B12 is a group of researchers and doctors who are looking into B12.

They have regular zoom meetings.

club-12.org/

3) A good article to pass onto GP.

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

[Sleepybunny in reply to Sleepybunny]

I often urge UK forum members to track down the local B12 deficiency guideline used by their ICB (Integrated Care Board) in England, Health Board in Wales/Scotland.

GPs are likely to look at these local guidelines for advice on diagnosis/treatment. Some of them are not helpful....see blog post below.

b12deficiency.info/gloucest...

If you can't find them online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.

Link to NICE CKS (Clinical Knowledge Summary) for B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

NICE are developing new B12 deficiency guidelines to be published in 2024.

nice.org.uk/guidance/GID-NG...

nice.org.uk/guidance/indeve...

ICB and Health Board B12 deficiency guidelines are likely to be updated after new NICE guideline is published so keep an eye on them.

[Wwwdot in reply to Sleepybunny]

Sleepybunny you are a SUPER STAR! ⭐️⭐️⭐️⭐️⭐️

[Cornwaller]

The neurologist opined there was no damage to the nerves. How did he know? Did he present any evidence? I am uncertain that there is any method that can establish that there is no damage to any nerve.

But you are left with exhibit A - pins and needles, a well established symptom of nerve damage.

But then we're not neurologists!

[Arranger in reply to Cornwaller]

I had nerve induction tests and they said there was nothing wrong with the nerves

[bookish in reply to Arranger]

Did they do thermal threshold testing for small fibre neuropathy, or a biopsy? Nerve conduction tests alone cannot rule out a nerve problem. Also how is your blood sugar control, and do you supplement magnesium (or have they tested it)as low magnesium can cause similar neuropathy. There are many reasons for poor blood flow or lack of nutrients. Did this have a trigger, like an injury or illness or stressor, and is there a history or family history of autoimmunity or malabsorption? Best wishes.

[Sleepybunny in reply to Arranger]

Hi,

I read that nerve conduction tests only pick up damage in large nerve fibres but not damage in small nerve fibres.

You could ask your doctors about the possibility of small fibre neuropathy (SFN).

Tests for SFN include taking a skin biopsy and there are others.

I searched online using terms "tests small fibre neuropathy" and for "common symptoms small fibre neuropathy".

Foot symptoms seem quite common in SFN.

I'm not a health professional.

[Cornwaller]

I'm not medically qualified.

However, from what I can read the test works on the main myelinated nerves in the area of the test. So it doesn't test everything else. So a positive test result demonstrates that those main myelinated nerves tested are functioning. So from that result it cannot be said that there is nothing wrong with any of your nerves. However, it can be said that the main nerves are functioning and there is no indication of neuropathy in them. So it does leave open the possibility of damage to other nerves that could be the cause of your symptoms and as others have said additional b12 therapy might alleviate those symptoms.

Best wishes.

[Hockey_player]

My feet get tingly in 2-3 weeks after an injection so I need injections more often than every 3 months. They recommend every other day injections until you get rid of symptoms like tingly feet.

[Wwwdot in reply to Hockey_player]

Hi Hockey player

You are right but we seldom get more than 6 loading doses then 1 every 12 weeks - I would be dead on that. Just about managing on every day. I try to extend to every other day but not got there yet. I don’t want to inject every day … it’s the worst 5 mins of the day, it spoils my waking when I remember I need to inject … as I have said, we need to row our own boat.

🤗🤗🤗🤗🤗