Help improve the diagnosis

18 Oct, 2017

We know that there are serious problems with the diagnosis of Vitamin B12 Deficiency in general and Pernicious Anaemia in particular. And the new Guidelines from the British Committee for Standards in Haematology acknowledge these shortcomings and point out that the Active B12 Test along with Methylmalonic Acid (MMA) testing could be the way forward.

Viapath is a company that have been offering the Active B12 test for many years and they are hoping to make the Active B12 and MMA tests more widely available for patients through a cost effective and easy to use channel.

Viapath is gathering patient feedback and insights to help them adapt and improve their tests via a short (5-10 minute) survey and would like to hear of your experience of getting, or not getting a diagnosis.

Do you live in the UK and have a few minutes to spare? Then please participate in this valuable project.

The survey is now closed. Thank you very much to all respondents, your help is much appreciated!

6 Comments

  1. Colleen Gardiner

    My neurologist says I have nuero damage due to b12 def but intrisinic factor tests cannot be used as proof of pa only full anaemia. My Gp and rheumatologist say that I do have Pa and I now receive 8 weekly injections.My dx was in 2008 the 8 weekly injections started in 2014 . The confusion is soul destroying. When I questioned my nuerologist a letter was written to my Gp to state that I had made a complaint about my lack of treatment,and a copy was placed on my hospital file which impacted on my treatment and resulted in awful actions from nhs staff. Life became so hard that I have considered suicide but I care for my disabled child and do not have the luxury to chose this route. This should not happen to anyone. Confusion is rife and clarity needs to be provided with clear quide lines for treatment. I wish you all success in your efforts.

    Reply
    • Sue

      My heart goes out to you.I know what it is like trying to get the B12 shots regularly.I was actually abused by a GP just recently for asking to possibly have more frequent than 3 monthly injections.She actually asked who “said” that I had PA.I replied that it was my Doctor of 16 years who had retired from the same practice.Having suffered enough of her abuse I walked out.Please do not give up,there has to be a good Doctor out there who will help you.

      Reply
  2. jim pejka

    My first doctor would only give me one shot and test me the next week. When my B12 reading went to 500,she said that’s it, no more shots. Everything I read about this was that it has to be overdriven until the pain starts going away. So I found another doctor and he gave me a prescription for weekly shots for 12 weeks which I gave myself.
    I had muscle wasting in the calves of my legs to the point they were half the normal size that they were. I have now taken 20 weekly shots and my leg muscles are about 70% back. The nerve damage in my lower legs give my shocks for about 8 weeks after I started the shots. That now seem much better but I still can’t walk over 100 yards before I have pain and burning in my right leg.
    I have had an operation on my back and leg from a doctor that thought he know what it was and neither did any good at all.
    I am wondering if I just have to keep giving myself these shots for months or years before this pain is gone. It’s a good thing you can overdose on B12 so you can run the table with it.
    Any input on this would be appreciated. thank you–Jim

    Reply
    • jim pejka

      I meant to say, it’s a good thing that you can’t overdose on B12 not that you can–My mistake

      Reply
      • Webber

        I have pernicious anaemia I was diagnosed years ago
        My Gp overdosed me on b12
        I was told I did not need any more injections.
        My son is 18
        17 yrs later I was told once got pernicious anaemia it don’t go away I need to start back on b12 injection.
        My GP didn’t even no I use to have injections and was stopped years ago I have constant
        numbing feeling in my hands and fingers and it’s really painful Especially in the morning it’s worse
        I really struggle with zips buttons laces etc I get constant cramp in my legs I can’t bend my thumb my thumb is really painful it feels like it’s going in and out of it joint the pain goes up my wrist I’ve totally lost my balance.
        I really struggle with everyday things breath-fullness combined with my metal health with ptsd

        Reply
  3. Virginia Hammond

    I gradually ‘collected’ many of the symptoms of a B12 deficiency over a period of years I think maybe starting after several years of taking a low dose of Ometzaprole to protect against Ibuprofen taken after bilateral hip replacement op. However, I did care for a great-Aunt with PA many years ago so it is in my family. My various GP’s failed to pick it up even when my list of symptoms included almost all of the suspects. Eventually I took to the Internet after anaemia was mentioned vaguely so asked for a blood test not knowing that the one used for many conditions doesn’t include B12. That would cost the NHS £3 – I would happily have paid a hundred times more by then! So it went on another few months or so when my gait was dangerous and I demonstrated that to the GP who then seemed to cave in with the offer of a second blood test! This turned out to be the correct one and put my reading at 150 meaning I was immediately told to have 2 injections a week for two weeks, then was changed to 1 every 3 months. A blood test then meant it was changed to every six weeks but this last week a further blood test might well move me back to 3 months which I doubt will work for me as my gait and neurological symptoms have come back over the last month.

    Reply

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