UPDATE ON MY B12 DEFICIENCY

I started self injecting b12on the 15th of Feb 2017 and my improvements are I can now walk toe to heel the length of our room whereas previously as soon as lifted one foot to out in front of the other I would loose my balance and standing feet at hip width with arms out in front of me and eyes closed is not a problem though I do still get wobbly on stairs. I showed the Doctor my improvement and he said well that's probably as good as it will get you might as well stop taking the b12 now. I have of course ignored him and have found over the last 2-3 weeks the numbness in my feet is decreasing the heaviness of my legs is lightening. I am really pleased with my improvement so far and would just like to offer thanks to your organisation and the wonderful people who give their time to help us.

By the way I met Dr Chandy last week I went to he coffee morning at Peterlee and he was there he asked me what he could do for me I explained how I had been and what I was doing with B12 injections he said by my course of action I'd probably saved myself from being in a wheelchair, so once again thank you for all your advice.

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  • Hi,

    Great to hear a positive story of improvement.

    "showed the Doctor my improvement and he said well that's probably as good as it will get you might as well stop taking the b12 now"

    Think the doctor's comment about stopping shows a lack of understanding about B12 deficiency. PA and some other causes of b12 deficiency require lifelong B12 treatment.

    Stopping B12 treatment could lead to neurological damage in some people eg SACDSC Sub Acute Combined Degeneration of the Spinal Cord. I think the only people who could contemplate stopping B12 treatment are those who have a temporary cause or perhaps people whose deficiency is caused by diet, who have changed their diet.

    The BNF (British National Formulary) Chapter 9 Section 1.2 makes it clear that following loading doses, there should be maintenance doses.

    evidence.nhs.uk/formulary/b...

  • Hi PaulFoster. That's fantastic news 🙃😄. And I can tell that you're not going to fall for any of your GP's numpty tricks 😉.

    People here have reported continued improvement a year after starting the every other day regime so...just keep on jabbing...for as long as it takes..

    Leaping and shouting on your behalf...made my day 👍

    Thanks for the update...gives everybody here a boost when we hear such good news 😄🍾

  • Well done PaulFoster - pity about your doctor though. Give him something useful to do and ask him to check your iron and folate levels - unless of course you already know them.

  • Cheers Clive my folate was 8.3 ug/L on the 31st of Jan they were 9.6 ug/l on 4th of Jan my Ferretin was 110 ug/L

  • I am three years into my treatment/maintenance where i inject weekly and I am finally feeling sustained mental /psychological improvements. Drs don't know because they are thinking clinically. Keep on course, keep up the injections and pay more attention to how you feel....that's the most important piece of PA. Never settle for "this is the best you will get" you will incrementally improve....time and injections will prove itz

  • Well done ljmulledy I am convimced I am on the right track and wont let the doctor put me off at all. I met a young man last week who had gone blind in one eye and the b12 shots gave him his sight back.

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