b12 103 and vit d 26. injections not working nor vit d tablets. nero symtoms

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Im very weak and pale can hardly move with out exhaustion. Have tingling down left side alot. Loss balance alot and forgetfullness. Doctor said to see how it goes but with 12 and half hr shifts i feel like i. Need to be better asap as it is affecting work. I get blurred eyes and muscle spasms too. I have a b12 injection every three months did have a loaded course but didnt help and i have to take 800ul fulitum or however it is spelt twice a day for three months. I had the nero symptons six months before the doctors visit. Nothing is helping and i feel like noone understands what can i do.

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  • Posted

    hi debbie you really need to be taking folate acid with the b12 injections , also the vit d dose has to be higher, my  vit d level was 25 and went to 92 in 3 month with taking 1000 d3 x
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  • Posted

    Debbie join the pernicious anemia society - lots of invaluable help, forums and lovely people

    It's been a huge help to me. I know exactly where you are as have been there myself

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  • Posted

    Thank u both. Its really horrible because im genarally the type who just gets on with it and i just cant do that i just wish doctors would take it more serious. X
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    • Posted

      It's a nightmare Debbie. Took me months to be diagnosed and unfortunately I now have major leg issues and a wobble struggling to walk and the stairs r a mountain!! I'm on an injection every other day at the no but feel no better - infact I feel worse!!! Doctors not really interested either as they just don't understand b12 - Mine has admitted this!!!

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    • Posted

      Oh no sorry to hear that. I think i need injections every other day as i have nero symptoms but they have said every three months no other testing. X
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    • Posted

      Please please push for every other day as your symptons will worsen without them - read up and screen shot on th pa society and take with you hopefully they'll listen!!

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    • Posted

      Thank u. Yeah im going back monday but i just feel like they think im wasting their time but it is getting to the point whre i am even questioning giving up work as its that bad and i have never really visited doctors before this xx
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    • Posted

      Debbie you sound like me!! I have been on the sick for 4 weeks and just signed off for another 4 - questioning giving up too - it's awful isn't it and you feel so alone as no one understands - especially Doctors!! Xx

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    • Posted

      I know excalty how u feel. Hope u get sorted soon. Unfornatly i got the type of boss who would fire me for going on the sick. Its terrible dont know what to do xx
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    • Posted

      my 22 year old son had to give up his work last year due to low b12 and vit d , he was able to get sick notes from the gp for 6 months we are due to see a neuro next week and hoping he will write to gp to start injections )fingers crossed
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    • Posted

      Seriously!! Well he can't do that if you have a sick note. You really need to rest as much as poss as by over doing it you stress your body even more xx

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    • Posted

      Yeah i seen it before. She says well we r all tired. Its so little understanding but i feel like i wont have a choice soon with how i feel xx
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  • Posted

    Hi Debbie04466,

    I am not a medically qualified person but am interested to know have you been diagnosed with Pernicious Anaemia and are you as Jazzyanne suggests supplementing with folic acid as this is essential to process the B12?

    As you are suffering neurological symptoms you really do need to get your doctor to look up the British National Formulary guidelines as below:

    Treatment of cobalamin deficiency

    Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

    Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks. 

    The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement.

    However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment.

    It seems to me that you need more frequent B12 until thye symptoms abate.

    Sadly, what you are going through, despite the B12 injections, is not uncommon as it takes a time for the repairs to your nervous system to happen.

    I was 13 years between stomagh surgery and a P.A. diagnosis by which time i was a walking Zombie and that was nearly 45 years ago, but be assured thare is life after P.A. as I'm still "clivealive" aged 75.

      

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