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Stuck in hospital

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  • Adrian_Scope
    Adrian_Scope Posts: 10,821 Scope online community team
    That's brilliant @abbeym395. Really glad you're feeling a bit better about this. :smile:
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    Scope
  • abbeym395
    abbeym395 Community member Posts: 22 Courageous
    Unfortunately it was somewhat short lived.  My ability to eat and drink has deteriorated again and my sleep is appalling.  But my test results are fine so nobody seems to care.  My head is pounding my bowels are ridiculous and I get so tired doing even the smallest thing.  I don't know where to turn or how to handle this as everyone just seems to be shrugging their shoulders and saying they don't know.  And the last few days I've come across so many people with a bad attitude towards me because of my wheelchair and it's driving me nuts.
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    I'm sorry to hear that @abbeym395, how are you doing today?
    Scope

  • abbeym395
    abbeym395 Community member Posts: 22 Courageous
    I found a GP that was willing to listen on Tuesday, after my dietician told me to see them.  They've helped me push to get my gastro appointment moved to next Wednesday.  I feel like hell and I'm barely eating but at least I have that to aim for now.
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @abbeym395, I'm glad you were able to find someone to listen to you. I really hope the appointment is helpful and you'll know more after that! 

    Wishing you a lovely afternoon Abbey!
    Scope

  • Hayles7
    Hayles7 Community member Posts: 8 Connected
    Hi @abbeym395 my so had the same symptoms as yourself and by a stroke of luck and someone else sharing their story I found out about a functional B12 deficiency. 
    Once I found out that a functional B12 deficiency doesn't show up in a blood test I did a lot of research and practically begged the doctor to do a therapeutic trial of B12 injections. They agreed on the basis that it wouldn't do him any harm. So he had 6 injections over 2 weeks and exactly 2 weeks after the first injection he stopped being sick. He has B12 injections every 3 weeks now and he hasn't been sick since. B12 deficiency also effects your mental health and everything you have described. I strongly suggest you research pernicious anemia. I would love to know if you find this information helpful x
  • Albus_Scope
    Albus_Scope Posts: 3,603 Scope online community team
    edited March 3
    Heya @Hayles7 welcome to the community! Thanks for your input here, B12 deficiency is so common, but GPs are only just starting to check for it, it seems very silly.  This discussion is from 2019, so I'm really hoping they've been able to get some help. :) 
    Albus (he/him)

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  • Hayles7
    Hayles7 Community member Posts: 8 Connected
    It really is very common but very often misdiagnosed. The biggest problem is even if Doctors do test for it,  most of the tests are known to be flawed and because it shows normal in blood tests they think it's ok even though it doesn't show active B12 levels. 
    I did notice that it was from 2019 but I know if I hadn’t researched it that my son would still be very poorly because the doctor told us it 100% wasn't a B12 deficiency. We were lucky a different Doctor agreed to do the therapeutic trial. 

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