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Recently Diagnosed Severs B12 Deficiency.

Posted , 5 users are following.

susie49243
susie49243

I have just been diagonosed with B12 deficincy my B12 Level was 52 when I was hospitalised after losing the abilty to walk. 

I am BEYOND tired. My legs are numb and tingling my hands and arms are the same. I cant stand or walk due to balance issues. I have undergone testing and the sensory nevres in my arms and legs are not working. I have lost 19kg in 4 months, My hair is falling out in clumps, my vision is blurry, I cant think, I forget stuff all the time, Ive been getting heart palpatations, My muscles are wasting away. I cant even feel if I need to go to the toilet. 

Nothing is working and infact its gettig worse since leaving the hospital I have lost the sense of tast and my face is now also numb.

They gave me three doses in hospital of 800mcg B12 injections. Then they sent me home. Ive had three shots since but its not working. Now they reckon I dont need one for another 3 months. My doctor has said Im the first paitent he has seen with such a bad deficiency. Im not sure he is doing the right thing. They decided I wouldnt need one for three months BEFORE getting another blood test.

Does anyone know the BEST treatment plan. The longer my levels are stupidly low the the more chance this nerve damage will be permanent.

I feel I may have to research this and educate my GP.

Any info, reading videos you could suggest would be great. 

 

0 likes, 4 replies

4 Replies

  • isabel1
    isabel1 susie49243

    Posted

    Hi Susie

    sorry you are having it so bad.

    Usually on the right hand sde of this page is a link to PAS  - Pernicious Anemia Society.  This is a great site with a forum that has so many helpful and knowledgeable people who will try to help you.  It will also give you the list of books written about PA and vit B12 deficiency.

    you can phone them too if necessary and they are so understanding.

    hope you can find the site and get the help you so badly need.

  • marion29181
    marion29181 susie49243

    Posted

    It sounds to me as though you really need to speak to Martyn Hooper, the founder of the Pernicious Anaemia Society. Where there is neurological damage you should be having much more frequent injections. He can intervene in cases where patients are not getting the help they need. He has also written some books that will explain everything. They can also supply information leaflets for your GP. Good luck with getting the right help and treatment, and feeling well again. Marion x
  • jazzyanne
    jazzyanne susie49243

    Posted

    Hi Susie did they check your vit d, folate and ferritin, i know some who inject most days add your self to the PA group of facebook you will get great advice on there
  • debbyog1
    debbyog1 susie49243

    Posted

    The NHS website says injections every other day for two weeks, or until your symptoms have stopped improving.

    52 is crazy low.

    Its important to get your level over 500 and keep it there. Other european countries and japan treat at 500 ..uk level for treatment is set too low.

    Are your iron levels ok?

    Hope you feel better soon.

    Deb

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