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Vit b12 deficiency and unsteadiness

Posted , 7 users are following.

manasa_55242
manasa_55242

Hi

I was diagnosed with vit b12 deficiency and my levels were 76.

My symptoms are

internal tremors

Jelly legs arms over all body weakness

Confusion

Unsteadiness,very difficulty in walking

Muscle weakness

Muscle twitches

Chest pains

Palpitations

I was given alternative day shots of vit b12 for 1and half months then my levels were above 2000 doc asked me to continue with monthly injections for life time.

But I see no improvements.

Internal shaking has reduced considerably but I am off balance all the time. Very tired and confused.

How long will it take for the recovery.

Reply unsteadiness.

Plz help.

1 like, 36 replies

36 Replies

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  • jazzyanne
    jazzyanne manasa_55242

    Posted

    hi how is your folate level as it has to be at a good level for b12 work, plus has your vit d been checked
    • manasa_55242
      manasa_55242 jazzyanne

      Posted

      Folate levels were not checked. Vit D was 15. So I am taking d rise once a week.
    • jazzyanne
      jazzyanne manasa_55242

      Posted

      what dose of vit d are you taking as your level was really low, plus try and get your folate checked as you prob need to be taking folic acid when on b12 injectins , are you in the uk 
    • manasa_55242
      manasa_55242 jazzyanne

      Posted

      No I am from India. And I take 60,000(sry for not knowing the units) powder that the doctor has prescribed me.
    • jazzyanne
      jazzyanne manasa_55242

      Posted

      sounds like you are doing everything right maybe get your folate checked
    • manasa_55242
      manasa_55242 jazzyanne

      Posted

      OK. Thanks a lot.

      Do u have any idea as to what is the recovery time. I feel dizzy all the time.

    • jazzyanne
      jazzyanne manasa_55242

      Posted

      it took me a few months to get my vit d levels up, b12 can take a while to repair but you really need to be taking folate with b12 
  • debbyog1
    debbyog1 manasa_55242

    Posted

    Hi

    It can take weeks or months for improvement to show.  If you have been seriously low for a long time it will take a while for your organs to recover.  Keep going with the shots don’t worry about the high levels, any excess is is harmless and is just excreted in your urine.  Be thankfull you have been offered this for life...it may have saved your life.  Many people battle for these injections for years.

    Good luck xx

    • manasa_55242
      manasa_55242 debbyog1

      Posted

      Hi

      My levels are above 2000 now should I continue taking injection every alternative day. Till the symptoms improve?

    • manasa_55242
      manasa_55242 debbyog1

      Posted

      I am just worried about being so unsteady all the time. Hope it's a reversble damage of b12deficency.

  • clivealive
    clivealive manasa_55242

    Posted

    Hi Manasa, sadly there is no quick answer to "how long will it take for the recovery" as a lot will depend upon how long you were B12 Deficient and the amount of damage done to your nervous system in the first place.

    It is not uncommon even for symptoms to appear to get worse before the get better as the B12 starts to repair the damage.

    It is still "early days" and the injections are not an overnight magic cure.

    It seems your doctor has read the BNF Guidelines in giving you alternate day injections but they go on to say "patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement".

    I am not a medically qualified person but I think your doctor is wrong not continuing your injections simply because they level was 2000 as you cannot "overdose" on B12, any excess being excreted in the urine.

    What is vitally important is your Folate level as this is essential to process the B12 you are having injected.  Did your doctor prescribe or suggest you take folic acid? If not I suggest you ask for your serum Folate to be tested as without supplementation it may be too low.

    I would be interested to know why you became B12 Deficient and there is a great long list of "people who are at risk" which I will put up in a separate reply.

    • jazzyanne
      jazzyanne manasa_55242

      Posted

      my gp started me on acid flux meds last week, but i found out they deplete b12 and cause osteoporis going back next week to see if i can get a alternatvie x
    • clivealive
      clivealive manasa_55242

      Posted

      There you have the answer Manasa.  B12 can only be naturally sourced from meats, fish, eggs, seafoods, poultry and dairy produce.

      However your diet may well include enough Folate from your vegetables, but I would still get your level checked to be on the safe side.

      The PPI reduces stomach acid but as you are now on B12 injections they probably won't be an issue.

      I wish you well for the future and hope your symptoms beging to improve soon.

    • jazzyanne
      jazzyanne manasa_55242

      Posted

      220 but cant get gp to give treatment in the uk as the range starts at 200 - 900
    • manasa_55242
      manasa_55242 clivealive

      Posted

      Thanks a lot. Can u plz tell me if unsteadiness is a reversible damage or irreversible damage of b12
    • jazzyanne
      jazzyanne clivealive

      Posted

      clive am confused my b12 is low but cant get gps to treat me , do you think this may be the cause of my reflux and do you think injections would help this issue, am i doing more harm by talking omperazole 
    • jazzyanne
      jazzyanne manasa_55242

      Posted

      have you had your ears checked re the balance issues i know we cant put everything down to low b12 you should join the b12 groups on facebook x
    • clivealive
      clivealive manasa_55242

      Posted

      As I said it is still early days, you must learn not to worry and become a patient patient.
    • clivealive
      clivealive jazzyanne

      Posted

      How low is low Jazzyanne?  I doubt low B12 causes reflux as it's more likely the PPI causes the low B12

    • clivealive
      clivealive jazzyanne

      Posted

      I see my reply is being "moderated" this keeps happening to me and I never know the reason.

      Here is an abridged version with "credits" removed.

      Types of tests for B12 Deficiency" talking about the Serum Vitamin B12 Test it says:-

      However, it appears that these markers demonstrate B12 deficiency primarily in patients whose serum B12 is in the "gray zone" (a serum B12 result between 200 pg/ml and 450 pg/ml).  We believe that the "normal" B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml

      Sadly many doctors simply read the test results on screen instead of listening to their patient's symptoms.

      ?What symptoms do you have?

      Have you thought to join the Pernicious Anaemia Society?  It costs but £20 for a year's membership and they will contact your doctor if necessary on your behalf if you explain your circumstances.

      I'll try again

       

    • jazzyanne
      jazzyanne clivealive

      Posted

      my main prob is triedness , and i feel my muscles are so weak, anixey swollen tough that i think i will talk to my gp about
    • manasa_55242
      manasa_55242

      Posted

      Clumsiness and tired no mood to work I just want to sleep all the time.
    • clivealive
      clivealive jazzyanne

      Posted

      I suggest you list your symptoms and present them to your doctor as it is so easy to get confused and forget vital things when face to face.  

      Also, can you take someone with you who can verify your symptoms as the doctor is less likely to pooh pooh you in front of a witness.

      The BNF Guidelines say "patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement". 

      I would also ask for your Folate level to be checked as this is essential to process the B12 should you be given injections

    • clivealive
      clivealive manasa_55242

      Posted

      This the same reply I made to Jazzyanne:

      I suggest you list your symptoms and present them to your doctor as it is so easy to get confused and forget vital things when face to face.  

      Also, can you take someone with you who can verify your symptoms as the doctor is less likely to pooh pooh you in front of a witness.

      The BNF Guidelines say "patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement". 

      I would also ask for your Folate level to be checked as this is essential to process the B12 should you be given injections

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