Dead legs, arms etc.

[JT5790]

Hi,

If I sit down for a while then stand up my leg is dead. Like not numb, dead. Takes a minute to sort of come alive again. Could this be part of b12 deficiency? Paid it no mind but now I worry if it’s nerve issues, should I mention it to doctor?

[jade_s]

Before I started b12 injections, this would happen to me. In fact it had gotten progressively worse. For example my arm or leg would go dead after 15 minutes in a fixed position, like when leaning on my arm reading my phone or kneeling, until right before i got on b12 it would only a minute or two to go dead. I never made the connection at the time. As I've gotten better, this has more or less normalized. It will have to do with the nerve damage that B12D causes.

You could of course mention it but if they've made you wait 2 weeks for a followup when your levels are so terribly low, i wonder how knowledgable they are about B12D. You need loading doses ASAP. Please learn as much as you can about it in the meantime.

[deniseinmilden]

I used to get it a lot. Plenty of B12 for a long while has fixed it and it only happens now if my heart is playing up (arrhythmias).

Once you get your treatment it should be OK. Keep on this forum and people here will help you.

Always worth speaking to your Dr again. Did you get your heart checked?

[Jillymo]

You most certainly are not alone with the dead limbs. I get it a lot if resting on my arms but the worst is when I am sat on the toilet. My left lef and foot go completely numb ! I have mearly fallen many times due to it.

I thought it was due to poor circulation but it has improved since starting the B12. I used to call it my rubber leg and would try and move it to get it functioning again. We would be no good in a three legged race. 🤔

If you have a good Dr voice your concern's about this problem.

[Ratherbewalking in reply to Jillymo]

This happens to me, too! Also left side.

[Sleepybunny]

Hi,

When my symptoms were at their worst, I had those dead like sensations, mainly arms and legs but other parts sometimes.

A few B12 links that may be useful......

Some links may have details that could be upsetting.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

Testing for PA

pernicious-anaemia-society....

I have also read that a pepsinogen test may also help to diagnose PA.

PAS website has lots of useful articles and a page for health professionals that your GP may find helpful.

pernicious-anaemia-society....

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters brief, to the point and polite. Harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

UK B12 documents

NHS article about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines (main points from above document)

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

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 Hydroxocobalamin

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

NICE CKS B12 deficiency and folate deficiency

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

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

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

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages)

Local B12 deficiency guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.

Worth tracking down local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some UK local B12 deficiency guidelines have been posted on forum so

1) try a search of forum posts using terms "local guidelines"

2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines"

3) submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

If you want to know why I urge UK forum members to get hold of their local B12 deficiency guidelines, read the blog post below.

b12deficiency.info/gloucest...

Two 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).

UK B12 treatment info is out of date in above book, see BNF hydroxocobalamin link for up to date info.

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

Very comprehensive with lots of case studies.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

B12 article from Mayo Clinic in US

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

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

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[Dilly_blue]

Hi - I have something similar, when I wake in the morning (and if I sit down for a period later in the day) my lower legs / ankles just don’t seem to work (it is not painful, or numb, I am just not able to lift up on to my toes (a normal part of walking), or close my fingers tightly into a fist). It gradually eases up after a minute or so of trying to move (but there is definitely a bit of residual weakness left in my finger grip for a few hours after). Is this the same sort of thing that you have?

I have tended to think of it as an ‘episodic weakness’.. I have seen a neurologist about it, who did some tests to see if it was a channelopathy.

I have found that the day after a B12 injection, the episodic hand weakness disappears, but returns again within about 5 days..