B12 neuro signs

[Ldhall]

Hello everyone, can anyone tell me if they had b12 deficiency with out the pins and needles, I have on and off stabbing in feet and legs and knees and warm patch sensations in legs and arms head and feet, again these come and go quickly like something warm against me. I have also had on a couple of occasions waking up to one leg feeling dead/asleep from foot to knee. I have ringing in the ears too. my last b12 was 221 dr refused to do anything. oh memory is not great, watch a movie late at night and in morning cant remember what I watched. Cold wet sensation a few times too now thank you for any help

[clivealive Forum Support]

Hi Ldhall people with B12 deficiency/P.A. may experience some or all of the Following:

1.1 General Symptoms

The following general symptoms are common in those with PA:

 The Strange Tiredness

 Fog days, where you have difficulty in thinking clearly

 Weakness

 Fatigue

 Upset stomach

 Abnormally rapid heartbeat (tachycardia) and/or chest pains

 Abnormal yellow colouration of the skin (jaundice)

 Heightened sensitivity to hearing, smell, and taste

 Vision distortion, e.g. seeing stars, or double vision

 Breathlessness

 Headache

 Cankers (ulcers) in the mouth

 Sleep disorders

 Intolerance to loud sounds, flashing lights

 Intolerance to crowded malls (needing personal space)

 Tinnitus – ringing in ears

1.2 Neurological Symptoms

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.

1.3 Gastrointestinal Symptoms

The gastrointestinal symptoms of vitamin B12 deficiency may include:

 A sore tongue

 Appetite loss

 Diarrhoea and/or constipation

 Stomach pain

In addition you may have low Folate level and it is important that this is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom of the range.

Do you have any idea why your B12 level is so low?

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

[Ldhall in reply to clivealive]

Thank you very much clivealive my folate 4.1 was low normal as was ferritin 22ng my dr was not interested and refused intrinsic factor test as well as trial of b12 so lost as what i do next bmj guidelines didnt help me either. What i was confused about was i dont have pins and needles but do get warm patches on calves and thighs at different times these come and go different sites say different things some say that it is nero symptoms but I am unsure, dr also told me tinnitus is not related to b12 deficiency x

[Rmilla1 in reply to clivealive]

Does anyone know how long it takes for the neuro symptoms (pins and needles/cold in hands and feet) will hang around for? Just started weekly injections last month. Will be going on every two weeks for a while...it makes me anxious that I have had this symptoms for a couple of months!

[Rmilla1 in reply to clivealive]

Clive, I know you said that symptoms could get worse before getting better once injections start....did that happen to you as well with the neuro symptoms?

[clivealive Forum Support in reply to Rmilla1]

Hi Rmilla1

After nearly 46 years it's hard to remember exactly how I responded to treatment.

I do recall metaphorically "walking on air" that afternoon in May 1972 when my doctor said she at last (after two "Schilling's Tests") knew what was wrong with me.

Suffice to say the diagnosis of P.A. and injections of cyanocobamalin (every four weeks) started 13 years after having had two thirds of my stomach removed, by which time I must have been "running on B12 fumes".

Down through the years I experienced a return of some neurological symptoms in the run up to the next scheduled injection but have, in recent years, successfully negotiated with my previously "one size fits all" doctor to now have the injections every three weeks.

This experience is personal to me but there are many others "out there" who struggle similarly - and as I say - we are all different so there are no hard and fast rules and a lot will depend on the extent of the damage caused by the deficiency.

I wish you all the best for the future.

[greenbexy]

I get the 'the dead leg' from knee down on waking up. I made my husband raise the head of the bed, thinking it must be tilted! This was before I knew I was B12 def. He thought I was crackers, but obliged all the same! It didn't make a difference (I was convinced it was a circulation problem). I also get the trickle of water over the back of my hands, all very strange! I also get bad pins and needles, especially when waking. Memory also pretty poor, too!

Have you tried asking for a referral to a neurologist? Or even asking for a trial of B12 to see if makes you feel even a little better?

[Ldhall in reply to greenbexy]

I asked for trial but was refused stating level was fine and symptoms would not be present, i use to get the warm sensation very infrequently but last couple of weeks its been on and off mostly at night but can feel it just standing still too x

[greenbexy in reply to Ldhall]

When was you last tested? Is there another doctor in the practice? Take someone with you next time who can validate the memory problems, even though it could be B12 deficiency, try to make him/ her understand how worried you are. I know that 'we' can come across as B12 fixated by doctors or hypochondriacs but you must get a referral to at least a neurologist. For what it's worth my haematologist doesn't think my dead legs and pins and needles are related to my B12 deficiency!

[Ldhall in reply to greenbexy]

I have had it tested several times now, the max i got it to was 287 while supplementing with b12 in a protein shake, when i stopped it it dropped to 257, then again to 223 seen a lot of different drs there and all read notes from previous drs and agree with them .

[greenbexy in reply to Ldhall]

Regardless of vitamin B12 levels, you should still ask about a referral to a neurologist. Some doctors don't really know all the symptoms. As you are getting strange sensations and memory problems, I'm presuming that you are too young to have such deterioration of the memory?

[Ldhall in reply to greenbexy]

I'm 37 years old, I will try again with the drs soon thank you

[fbirder in reply to Ldhall]

The serum B12 test can give highly variable results. If they tested the same blood sample, with a true value of 250 then you could expect any result from 210 to 290. So you can't really draw any conclusions from your results.

greenbexy is correct. You need to see a neurologist.

[clivealive Forum Support in reply to Ldhall]

You could try quoting what The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

[Sleepybunny]

Hi,

Symptoms of b12 deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Some people on forum keep a symptoms diary.

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society) based in Wales, UK.

"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.

Are you in UK? If yes, I'd suggest reading the articles/documents below.

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 makes it clear that in UK, patients who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start initial b12 treatment. IFA test can help to diagnose PA but test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range.

BMJ B12 article

bmj.com/content/349/bmj.g5226

BMJ article emphasises need to treat people who are symptomatic for B12 deficiency even if B12 is within normal range, in order to prevent neuro damage.

BNF

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

NICE CKS

cks.nice.org.uk/anaemia-b12...

Neuro Consequences

Untreated or under treated B12 deficiency may lead to further deterioration including spinal problems. Is your GP aware of this?

Some forum members have passed info on neuro consequences to GPs in letters or in discussion. GPs don't always react positively to being given extra info. My personal preference is to put extra info in letters as in UK, my understanding is that letters to GPs are filed with medical notes.

PAS news item on Neuro Consequences of PA

pernicious-anaemia-society....

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

pernicious-anaemia-society.... See page 2

Unhappy with treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in link above is about under treatment of B12 deficiency with neuro symptoms.

Point 5 is about being symptomatic with an in range B12 result.

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/

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around world.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

If you think PA is a possibility, may be worth joining and talking to PAS. They can offer support and info about PA.

Lots of B12 info in pinned posts on this forum.

I am not medically trained.

[Thalia56]

I see you've had some replies with really thorough and helpful answers already so this may be somewhat redundant, but I didn't experience pins and needles before being diagnosed with B12 deficiency. If I remember correctly, my level was 128 at time of diagnosis. I was fortunate never to experience the dead leg thing, though I have had the burning skin feeling a few times since starting treatment (I don't think I had it before, but I felt so ill, with so many different things going on, it's possible I had it and didn't notice).

Is there another doctor in the practice you can see? I wonder if you could talk to them about the BCSH guidelines quoted by clivealive if you're not getting anywhere.

[Ldhall in reply to Thalia56]

Thank you for your reply, I have seen several drs at the same surgery but all keep saying nothing wrong, I have not mentioned the dead leg sensation as I was made to feel like it was all in my head, i just wish i knew if the warmth patches that come and go which effects different parts of my body now was a to do with b12, it has got more often than before, my test will be falsly high now as I had supplemented after test was done

[BethattheBeach in reply to Ldhall]

Ldhall Could I suggest that you begin to keep a journal of your symptoms? This will provide 'evidence' for you GP. Even if you just scribble on the back of an envelope to begin that will give you a start. Then you can put it all together into a list for the Dr.

I agree that you should take someone with you for the next appointment. Two brains are better than one B12 deficient one!! BTW, may I suggest you try to find another GP?

What country and region are you in? It seems that you need to find out why you are deficient and imho it is not something you should neglect. It is very dangerous to ignore a B12 deficiency.

So, well done that you have found this site. There is lots of support and knowledge available. Keep asking the questions and seeking help.

Good luck.

[Ldhall in reply to BethattheBeach]

Thank you for your reply, I will start keeping a symptoms list, I may have to register with new doctors as seen most at my surgery already.

[jillc39]

yes I certainly have had stabbing pains in my feet and legs - also ringing in my ears and other neuro signs - BUT they are mostly kept at bay now with pregaberlin and codeine and the now regular two weekly injections of the wonderful B12.

[Ryaan]

Your levels of B12, Iron, Folate and Vit D have to be good as symptoms overlap.

My tinnitus has gone with B12 injections. ( now only notice sometimes), was always there before B12 injections.

You can benefit from oral intake of B12 unless you have absorption problem which means you will need injections.

You can get tablets from Amazon. uk.....Jarrows B12 sublingual 5000.

That is high strength, you can get lower strengths also but your B12 is quite low. You can always start with high strength then when bottle finishes go on to lower strength....and you will have an idea of how much B12 benefits you. I think it’s normally 90 tablets.

[Ldhall in reply to Ryaan]

I had vit d tested it was at 30, so got that up as I was having bone pain which has now gone. my folate is always on low side was at 4.1 then at 8 that is the highest I have got it so far, my ferritin was at 22 then up to 42 but not had they rechecked yet. I am in the uk, I have been taking the b12 subs since my results 1000 a day, will see how i go for now thank you

[Ryaan in reply to Ldhall]

It’s importan to take Folate with B12 as they work together.

[Mahh]

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