Despair

I despair. My grandad was diagnosed with pa too late, he was diagnosed after collapsing at Christmas. The neurological damage was already done and could not be reversed. I worry so much that this condition is not treated with the respect it deserves. I tried to get an appointment for my b12 injection and heard a gp in the background saying it is not critical to get the b12 injection on the day it was due. My response to the receptionist was that it is critical for me. Keep up the good fight until medics recognise how serious this illness is to those that have it. Happy Xmas to one and all x

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  • Dear Turkey 2014,

    So sorry to hear about your Grandad. You will get so much help on this site whenever you need it. You need never feel alone.It will one day be recognised as the difficult, many-faceted condition that it really is.Until then read all you can on the internet and in the books on the subject. I have had to teach myself how to self-inject(Lots of help from this site) Also have found that Methycobalamin has, after 4 months, cured my numb feet. I would never have believed it possible. So never give up hope. Best wishes for a happy Christmas to you.

  • If you look on the net for "PDF BMJ Vitamin B12 Deficiency Hunt" it pulls up among the results the whole article for a research clinical research review.

    In it there are lots of interesting and relevant things. One of them which might help is that it says how blood levels go up are not reflective of how effective treatment is. It also tells you that 6% of patients will be left with permanent residual disability depending on when their deficiency was picked up ie if they were left undiagnosed or untreated for more than 6 months.

    If you give it to your grandad's GP it could help sway him to give injections more frequently and you also.

    Rather an unfortunate user ID you have there, Turkey - considering the season...

  • You are so right Turkey! This condition is not treated with the respect or urgency it deserves, as our family also experienced. Don't be alone though - there are many people here who are with you in the struggle against arrogance and ignorance.

    Whilst carrying on informing the medical profession and public, I would recommend supplementing B12 in any way you can to keep you and your grandad at optimum levels and as stress free as possible (am finding sublingual spray effective).

    Very best wishes to you both.

  • Ah, you mention 'stress free.'

    To quote Pasteur "...Bernard was right. The terrain is everything!"

    This is a neurological illness; the environment, the terrain, is everything!

  • Sorry to hear about your grandfather.

    You are so right about attitudes.

    the way people are left until they are feeling awful before they get maintenance shots makes no sense to me.

    Last week there were two articles in The Times about research into strokes that showed a high correlation between a) lack of balance and b) memory problems and higher risk of strokes and my reaction was - why is anyone surprised by this? lack of balance and memory problems are classic indicators of B12 deficiency and one of the known impacts of B12 deficiency is cardiovascular problems such as stroke ... don't know if the studies looked at B12 ... and yes there could be something else going on as well but ...

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