Pins and needles

Hi, I have been having pins and needles in hands and feet since my loading injections 2 months ago. I have read on here many times that this could be part of recovery process however it has started to travel up to elbows and knees. Is this normal or should I go back to GP? Not due another b12 jab until September and taking up to 3 sublingual tablets a day.

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  • Go back to the GP and ask for a referral to a neurologist. It may be that your peripheral neuropathy isn't due to your B12 deficiency.

    Your story sounds just like mine - tingling/numbness started at the same time as PA diagnosis - then carried on getting worse. I see my neurologist on Thursday, hoping he has some news as to possible causes (he thinks it may be autoimmune).

  • Thanks I will, hope you get some answers too. I have seen occupational therapist via work and she suggested seeing an immunologist but not sure about that. Will call Dr in the morning.

  • Good luck Fbirder. Be interested to hear how you get on.

    I also have 'creeping neuropathy' and am beginning to suspect some kind of autoimmune involvement. Have MRI of head and spine next Monday so guess we'll see where to go from there.

    Take care xx

  • Well, the neurologist is somewhat flummoxed. He's pretty sure it's an autoimmune problem. I had raised GAD antibodies (explaining my diabetes) and IgA. He's testing for coeliacs, despite my gastroenterologist saying I don't have it and my having no problems eating bread (indeed, my guts seem to work better for a good dose of wholewheat fibre every day).

    I'm also going up to London for a nerve biopsy - where they remove a 2-3cm length of nerve from your ankle and do loads of tests on it.

    Of all the possible things it may be the scariest ones involve a loss of motor as well as sensory function - so I'm now paranoid about muscle weakness. Ho hum.

  • Of grief Fbirder...paranoia is completely understandable ๐Ÿ˜–๐Ÿ˜–. Ho hum indeed!

    Know what you mean about muscle weakness...it's really very scary and a b****y nuisance.

    I think your greatest fear is the same as mine...I'm probable three (slow) steps behind you in the process.

    You're going to be on my mind now. I'll be keeping everything tightly crossed and sincerely hope that all goes in the right direction.

    Please do let us know how it goes. Take very good care ๐Ÿ˜€๐Ÿ˜€ xx

  • These bodies are just the devil to deal with when things don't click along as they should! The nerve removal sounds a little gruesome, but I sincerely hope you get good news from the testing.

    Good luck, fbirder! You know we're all rooting for you. :-) xx

  • Foggyme8Aug hope you get some answers.I was on the site earlier hoping you would materialize did you see my post last week about uniforms?also the physician who heads health unlocked very graciously acknowledged the sisters and staff nurses contributions when he first emerged from medical school. What I wanted to say was about the appalling interchanges earlier on the site.one would have thought street wise people were involved,it was disgraceful when this is a site ostensibly to promote knowledge not for a free for all.

  • Good advice from Fbirder, HeidiO. It's all so fiendishly complicated, trying to work out what's going on with the tricky thing called B12 deficiency.

    I also have creeping neuropathy and am currently seeing a neurologist to see if he can work out what's going on.

    Hope you get to see a neurologist soon...please let us know how you get on.

    Take care xx

  • I totally agree that you should get everything checked as B12 is not a panacea, but...

    I saw a neurologist who didn't think it could be attributed to B12d but agreed that he couldn't explain why else I had improved with daily injections and cofactors and he couldn't suggest a better, safer treatment.

    A year on I continue to improve and now rarely get pins and needles, the stinging I used to suffer or the skin itching.

    I hope you find a solution soon as it's so horrible when something gradually progresses.

  • Thank you for your replies, I will definitely ask to see a neurologist and get it checked out. Was only diagnosed in May so really at the beginning of my journey. It's so good to have this forum for help and advice with what can be such a confusing problem x

  • Hi Deniseinmilden. I'm currently torn between wondering if my increasing neuropathy is due to an adverse reaction, or side effect to B12 (it seemed to get worse when I 'upped' my B12 'cause it appeared to have stopped working) OR whether I just need more B12!

    I am taking lots of cofactors and levels seem to be okay now, apart from iron which is very slowly creeping up.

    It's such a minefield when you have to treat yourself isn't it!

    It's really interesting and heartening to read your experiences and I guess that if the neurologist comes up 'blank' and rules out other things, then I'll just 'go for it' and take even more B12.

    Fingers crossed, and all that...

    Take care xx

    P.s. Sorry for hijacking your post HeidiO ๐Ÿ˜€

  • No problem foggyme any extra helps me too! Just got back from seeing nurse practitioner, she has noted that I have asked for referral but wants me to have more blood tests first to check folate and vitamin d she has put on form that I am receiving b12 already and expects that to be high so if nothing else she is aware of that. Will keep you posted

  • Excellent news Heidi0. A nurse who seems to know what she's doing. Hurrah! Bodes well for you in the future.

    Good luck...will look out for your posts in the future ๐Ÿ˜€

  • I have similar issues Foggyme. Do you get nerve pain increase from your B12 injections? I do and it's pretty scary.

  • Hi with attitude, yes the pins and needles started after my loading injections but I learned from reading posts on here that it was fairly common and is a result of nerves repairing after damage caused from b12 deficiency. Before diagnosis I thought I was just clumsy! Was more worried that it had started spreading.

    Foggyme, nurse was good but did say this was as far as she could go and I would have to go back to seeing GP, not looking forward to that as they are very dismissive especially as I have read books and done research, you know the story! So maybe back looking for more advice soon x

  • No problem HeidiO. Something we've all been through and there are lots of people here to offer advice and support as and when you need it.

    GP's are not good at this are they. Ha ha (if it wasn't so vital)!

    Take care xx

  • Indeed I do Withattitude. And pins and needles. And aching muscles/bones. And yes, it's pretty scary!

    Have to say thoug, some things are improving (eye pain, vision, numb toes, black nails, palpitations, balance).

    Don't know if it's BEACUSE I'm repairing (only recently had enough B12 after being 'short' for at least four years) or BECAUSE I'm reacting (adversely, to the B12).

    I'm proceeding on the basis that if it's a repair thing good, and if it's a 'reaction' thing - well the B12 does appear to be doing something!

    Or maybe it's something autoimmune - don't know.

    Just had first appointment with neurologist so if he comes up,with any 'theories' that seem to fit, I'll let you know.

    Take care and hope you feel a bit (well much) better soon. Xx

  • Well, I'm really sorry to hear that you have pain and it is a little bit reassuring to know I'm not the only one. I'd really appreciate you letting me know what the neurologist comes up with and I've asked my GP to talk to Vialab at Guy's and St Thomas' Hospital, to see what they say, if anything.

    Does your pain ever stop?

  • Hi Withattitude...no, not really but it's a case of peaks and troughs, I think. I tend to notice it less if I can distract myself and focus on something else. Always worse at night when it's more difficult to do this๐Ÿ˜–.

    The worse thing is the shooting pains that grab me and take me by surprise - no ignoring them!

    Really good idea about Vialab. I'd be really interested to hear what they say.

    My GP would burst a blood vessel if I asked him to do something like that - but I'm going to give that one a try.

    Will definitely let you know what the neuro comes up with (wrote self a reminder so I don't forget) though it might take some time as the wheels of the NHS grind slow!

    In the meantime, if anything changes pain wise or I find something that seems to be working, I'll PM you to let you know.

    Here's hoping for improvements...๐Ÿ˜€

  • Don't suffer the pain without help. Mine used to wake me at night, so I went to see the doc and asked for medication. He suggested amitriptyline, but I asked for (and got) gabapentin.

    I sure notice the difference if I forget to take my late-night dose.

  • Hi kelsam 21, haven't been checked for glandular fever but yes for diabetes and that was all clear thankfully.

  • I have the same thing which began a month ago after my first injection. When I mentioned it to my GP yesterday, he said that neurological symptoms never go away. End of. I despair. I was going to ask the same question today myself, so thank you!

  • Hi Daisy77. It's really not that simple and I think your GP is probably not up to speed on all things B12 deficient.

    Whilst it's true that some neurological symptoms may become irriversible it not treated with sufficient B12 in the early stages, it's also true that if B12 is given in sufficiently high doses (I.e. enough to make the symptoms go away, especially in the early stages) then recovery may be possible.

    So the thing I would be asking myself is, 'am I getting enough B12'?

    The treatment protocol for B12 deficiency with neurological symptoms is 1mg every other day until no further improvement and then every 8 weeks. Your GP may. It know this. (Search for BNF guidelines - the GP prescribing bible (your GP will have a copy on his desk and could easily look it up).

    Are you on this protocol? Is it enough to keep you well (may not be if your are still having neuro symptoms).

    For some people, this is not nearly enough to get and stay well so many choose to supplement themselves, either through sublinguals, sprays, patches, drops or self injection.

    Also - have you seen a neurologist. Would be asking for a referral, if not.

    Good luck...let us know how it goes xx

  • Thanks Foggy. No I am not on the standard protocol which I have seen on here. I got a 2g loading dose a month ago and another yesterday. GP won't listen. But I have found a former nurse here who has offered to teach me how to self inject. Her father has PA. I ordered methylcobalamin from Amazon Germany who now have a website in English, so very easy. And needles,swabs,and sharp box from Amazon.uk. They use cyno at the surgery so I would rather try the methyl. I have an appointment with my fab pulmonary specialist in about a month. He is the one who noticed my big fat red blood cells. Also parietal antibodies in my stomach for 13 years...even so GP doesn't think I have PA as my B12 was in range probably because I have been taking a good b complex supplement which I told him about. Head and brick wall come to mind ๐Ÿ˜ฃ

  • Your GP sounds like a numpty...good for your, taking things into your own hands ๐Ÿ˜€. But what a shame that so many of us have too!

    Thank goodness for the nurse who's going to teach you how to self-inject. You'll be able to jab away with confidence and hopefully it'll make a big difference and help you to get this nasty little condition under control.

    Know exactly what you mean about head and brick wall!!

    Good luck, I'd be really interested to hear how you get on xx

  • Thanks. Can't say I am looking forward to it, but if I can get my life back, I will do what is needed. xx

  • Which type is you injection? For some people it is very important to get the right form, whether it is cyanocobalamin, hydroxoco. or methylco.

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