Vitamin b12

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Hello to you all,I have now been put on b12 injections for the rest of my life,not a problem,I had a course of five,then every 3months,had my first injection of the 3month one,after 6 weeks,the symptoms started coming back,very tired,no energy,could physically not do anything,short term memory not good,short tempered which is not me,even now getting a dull ache around my sides,is this normal,very painful,I use to be so active,this is really ruining my life,to the point I can't even get my words out,can I have the injection sooner rather than every 3 months,because I can not go on like this anymore,many thanks, Mark.

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10 Replies

  • Posted

    Hi mark

    I take b12 tablets mine was low due to my restless leg syndrome,however I believe the symptoms you are experience are typical of p.a I too get irritable,my memory isn't always good I also have terrible clumsiness,which I believe is a symptom I'm not sure about pain in the sides I don't get that however I believe people can have some symptoms and not others with the injections I guess you would need to check this with your gp.

    Hope this helps your not alone,

    Take care

    Regards

    Sharon

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    • Posted

      Hello Sharon,thanks for replying,just come back from doc's,and have been put on injections every 10 weeks rather than every 12 weeks,so fingers crossed,but to be honest I start going down hill after 6 weeks,but the doctor needs to have a meeting to discuss my case to get the injections sooner,let's just see what happens,it's so frustrating,being that I was always an active person,anyway thanks again for reply,kind regards Mark.

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    • Posted

      According to the N.I.C.E Guidelines if you have P.A. and neurological symptoms your B12 injections should be every eight weeks.

      https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwiWus3qnNLWAhWRbFAKHe3DBhkQFggoMAA&url=https%3A%2F%2Fcks.nice.org.uk%2Fanaemia-b12-and-folate-deficiency&usg=AOvVaw3LC_YfL2F81El6A4vHmGvE

      Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 Deficiency".

      Also, ask to have your Folate level checked as this and the B12 help your iron to function properly in the body and produce red blood cells.

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    • Posted

      Hello Clivealive,thanks for the link made interesting reading,I'm back to docs on Thursday for b12 injection and blood tests,will mention it to them,thanks again,kind regards,Mark.

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    • Posted

      It is also important that your Folate level 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.

      Hopefully your doctor won't be testing your Vitamin B12 level as this is deemed unnecessary once injections have started - unless the result comes back very LOW.

      I'm not a medically trained person but I've had P.A. for more than 45 years and am still "clivealive" and over 75.

      I wish you well.

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  • Posted

    Hi mark

    Sorry to hear its going to take longer for you to get anywhere,I know how frustrating it all is with my rls it took them years to diagnose it then years to get it to a fairly stable level although I don't think I'll ever be the same person I used to be but there you go we struggle on ,hope you get sorted soon and start to feel better,

    Chin up

    Regards

    Sharon

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  • Posted

    Morning everyone,well had my blood test done,and also my Folate ,thanks to clivealive,as I was not aware of this,and doctor never mentioned it,so thanks for the advice,also had my b12 injection,which you now know I have managed to get down to every ten weeks,so watch this space,after the b12 injection on Thursday I wasn't my self,just feeling a bit spaced out,and Friday was a little bit better,but everything was a big effort to actually do anything,is this normal after injections,just coming to terms with this illness is quite overwhelming to be honest,how do you all cope,to hear your ways of coping with Pernicious Anaemia would be very much appreciated,thanks for listening,Mark.

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    • Posted

      It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

      I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

      A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

      In my case it was 13 years between gastric surgery to remove two thirds of my stomach at the age of 17 back in 1959 before I (eventually) got diagnosed with P.A. in 1972 by which time I was a "walking Zombie".  I was "put on" cyanocobamalin 1000mcg every four weeks for the rest of my life.

      I cannot now remember how long it was before I felt any much better but at the time I had two daughters under six and a sick wife with heart problems (from which she died in 1992) and I was two years into a new career in accountancy for which I had been "re-trained" by the government due to my inability to continue my previous trade of electrician.

      Prior to my my re-training in 1969/70 I was unemployed/sick for nearly three years and thus became registered disabled.

      However, I'm proof that there is "life after P.A". smile 

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    • Posted

      Good afternoon clivealive,thanks for the reply,I just never really thought of it in the beginning as being that serious,the doctors never really tell you that much,so thank God for these forum's,I suppose it makes sense that the b12 is repairing the damage to your body that is why I feel the way I do,it's a lot to take in,but listening to you and your story makes me appreciate you can still live your life,albeit a little different now,and I guess I'm going to have bad days,it's learning to deal with those days, and except it is what it is,I know it's more frustration than anything,where I'm so exhausted and can't keep my eyes open,and can't get my words out etc etc,will these bad days go eventually or as you say depends on the individual,kind regards Mark.

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  • Posted

    Very simply put the B12 deficiency, however it is occasioned (by P.A., surgery, diet, medication etc) damages the myelin sheath at the nerve endings which acts like electrical insulating tape.  Reintroducing B12 repairs that sheath allowing the signals get through to the brain again.

    Hopefully, over time all repairs will be successful but there is no guarantee. Some may improve quickly - others not.  I've learned to accept my "limitations" in what I can or cannot do physically and I'm thankful for my regular "little shots of Red-Ex" as I call them.  I've also take a 400mcg folic acid tablet every day for more years than I can remember.  These can be bought cheaply over the counter at any pharmacy or supermarket.

    I wish you well for the future.

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