Pins & Needles & tingling

[KTMac]

I saw the neurologist who said my pins & needles and tingling were the wrong sort for it to be caused by B12

So what are the right sort?

[Hidden]

Sorry to read your appointment did not go well for you, I'm not sure what would be seen as the wrong or right sort to be honest..

This link gives loads of info about Vitamin B-12 Associated Neurological Diseases see:

pernicious-anaemia-society....

[KiPeRi75 in reply to Hidden]

Couldn't open this link Marre.

Thanks to you and gambit for being willing to answer so many questions and giving your support on here.

J x

[Hidden in reply to KiPeRi75]

How weird, here it is again:

pernicious-anaemia-society....

Some more:

emedicine.medscape.com/arti...

[Hidden in reply to Hidden]

The links are not working on here, I do not know why.

[KiPeRi75 in reply to Hidden]

Thank you - I've got them now. All saved ready to digest at a later date!

[Gambit62 Administrator]

Sorry the neurologist wasn't very helpful. Really don't know what type of pins and needles he things are the right sort - totally new one on me - not that I've been around B12 that long. I have had problems in hands for years (diagnosed as 'carpel tunnel' about 20 years ago - after being told it was poor circulation 30 years ago) and suspect that - though I know there are other factors involved - that B12 has probably been part of what is going on - certainly some of the problems have decreased since I started using B12.

[Chancery]

The right and wrong sort - really? Sounds like hot air to me - and like he was trying to fob you off. I know he probably took you by surprise this time - he would certainly have taken me by surprise - but don't stand for that BS, if you see him again make him explain what he meant, without all the cryptic nonsense.

[KTMac]

Apparently if I had neurological damage I would have pins & needles and pain all the time not altering length & duration

[Chancery in reply to KTMac]

Ah, it was a duration issue. I'm really not equipped to answer on that one since my neurological damage is all in the head, literally, but some of the bona fide PA sufferers on here could probably tell you if that was true or not. Still, you would think ANY symptom can wax and wane, wouldn't you? See if Marre or Gambit knows. They're usually good for an answer on any of the regular symptoms, and pins and needles is definitely a normal symptom for most PA sufferers, as well as a sizeable chunk of the B12 def' ones.

[Hidden in reply to Chancery]

I know I only get prickly feet/legs when very tired and due B12 jab, its not a permanent symptom for me at all, and often far more late evening, than morning. But then its all very confusing anyway as in once you are on B12 treatment you are clinically not B12 deficient any more, but obviously people run out of B12 in where ever, way before that shows in what ever blood test. I also have good days with my balance (convinced I have no problems at all then) and very bad days ( usually tired), so I can not see how that neurologist can make that statement. But I'm no expert...

[Chancery in reply to Hidden]

That's what I thought, Marre. I've never known an illness yet, anywhere on the body, that didn't have good and bad days, and didn't react correspondingly with highs and lows, including symptoms that came and went. Can't help feeling he was definitely trying to fob KT off.

[KTMac]

Well I'm getting my injection every 6 weeks & tbh the mix of drugs I am on are helping things so I may just monitor it for a bit

The newest one seems to have changed my life - but I guess it's just a honeymoon period and it may change

[Hidden in reply to KTMac]

Hope for you its just finally the right meds doing the right job and you will just improve more and more!

[KTMac]

Thanks - I hope so

Zinc, Vit D, B12 & amitriptyline

I may just have to twiddle the dosages to get it right

[Twitchen]

I waited for six months to get an appointment with a neurologist after a year of tingling in legs, feet, arms, hands and face. He spent about 10 mins with me and said that in many cases they never find a cause

I don't think he wanted to do anything, but I did ask if I could have a scan and blood tests to try and get a bit of reassurance. A few days ago I received copy of a very short letter he had sent my GP, saying that scan was fine (great) but,

"I note she as a positive parietal cell antibody and that some provisional blood tests have, in essence, returned as normal. This included a normal B12."

I didn't find this very reassuring as I have never heard of parietal cell antibody and still don't really understand what it means.

For the past few weeks I have been suffering from nausea, stomach pain and constant sour/bitter taste - worse at night. Even tried taking Omeprazole again for a couple of weeks, but that did not really help and so I have come off it as I don't like staying on PPI's long term.

Is this parietal cell thing any cause for concern?

There was no mention of any follow up and no suggestion that my GP should do anything, in fact I doubt if GP will even have the blood test results.

Many thanks for any advice or information.

[Hidden in reply to Twitchen]

Hi,

You may find reading this helpful, see:

British Society for Haematology's guidelines for the diagnosis and treatment of Cobalamin and Folate disorders:

bcshguidelines.com/document...

"(b) Gastric anti-parietal cell antibody

Gastric parietal cell antibodies (GPC antibodies) have a low specificity for the presence of pernicious anaemia since, despite being positive in 80% of pernicious anaemia subjects, they are also positive in 10% of normal individuals. Positive gastric parietal cell antibodies may cause gastric acid achlorhydria and progression to pernicious anaemia may occur. However, a positive GPC antibody test is not definitive for pernicious anaemia (Khan, et al 2009)."

I hope this helps,

Kind regards,

Marre.

[Twitchen in reply to Hidden]

Thank you Marre, that is reassuring about the positive parietal cell antibody.

[lesbud1]

I have no idea why your neurologist would say such a thing. I had and sometimes still have pins and needles and tingling and it is in my extremities, hands, feet and face. Does that help at all?

[joeltite1]

I have suffered permanent pins and needles in my hands,fingers and wrist ache and click all the time also pins and needles in feet,I had a carpal tunnel opp on my left hand last Sept,just got bloods back yesturday to fund out that my b12 is 145=range 180-910,so I'm thinking this is all related,but I have not been put on jabs,I don't think Dr has a clue