Struggles that we all have

I have been reading the exchanges and feel so grateful to you all. Just knowing someone is there to chat to helps enormously. Also I am able to keep perspective when I read about the tough stories of those with ME CFS and other issues related to B12. Sending a hug and thanks on the ether. I know that if my GP won't help me then you have offered me some ideas and options to try so that I do not end up going bonkers!

gillsie

4 Replies

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  • Thank you for your post.

    Its so easy to feel at the mercy of medical professionals who quite often don't really seem to know what they are doing even when they are really caring. Its really good to have this forum so you know there are others out there who have gone through the same thing and you really aren't alone or going mad.

  • I am quite new to this site and haven't made any comments before partly because I don't feel I know enough and partly because I feel lucky that I did manage to self diagnose and had a GP who agreed to do a PA test and set me off on my lifelong treatment. I am even having injections at 11 weeks rather than 12 as my B12 levels were just 300 after a years treatment. However I do still have symptoms and sometimes feel that I need injections more frequently than this. I am finding the questions and responses helpful although I find it hard to remember the finer details of the more technical information! Thanks everyone.

  • It's quite weird really because before you find out what it is, and when doctors are running around telling you there is nothing wrong, you feel quite lost. As if somehow the world is not the same place you thought it was.

    Then you find out you have a b12 deficiency and you know what is wrong and you are so relieved.

    Then they won't treat you and you realise your first assumption was correct!

    It is very reassuring to discover you aren't in the leaky boat alone - but I still think that even as a group we are very isolated.

  • I completely agree with you! I am new to the site too, and have put up posts, had advice and feel like I suddenly have a whole group of people who know how i feel and that understand me better than my own poor suffering family!!

    Off for my first B12 injection today- 1 hour to go :-) :-) :-) I have never felt so excited about having an injection before!!

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