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strange vision symptoms just be told im b12 deficient.

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sarah57965
sarah57965

Hey, im new to this.. knew somthing wasnt right for some time but gp put it down to anxiety before even doing bloods. My symptoms seem to be shaky . Like a wobbly feeling when i walk.. sore neck and shoulders would describe this as muscle tension.. habe this internal vibration thats really annoying.. also my vision is really playing up.. i see purple in my peripheral vision, white spots like when you stand up to quick.. also i get halos roumd lights rainbow ones .. with dry eyes.. omg so dry they can sting. Can anyone relate to these symptoms (EYES ESPECIALLY) and did your symptoms go away with treatment? My b12 is at 133 but gp said its not that low... your thoughts? Also i will reply as soon as i remember ive wrote this because my memory has been shocking aswell!! So have my headaches and skipped heart beats. Thanks...

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  • isabel1
    isabel1 sarah57965

    Posted

    Hi Sarah

    133 is low. If you go on to the pernicious anemia society site you will find out more about it.  Low b12 does affect your memory, can make you wobbly, make your eyes dry and cause all sorts of problems.  Is your gp going to give you b12 injections as it sounds as though you definitely need them.

    • sarah57965
      sarah57965 isabel1

      Posted

      Yea have my first one tomo.. every week for 5 weeks.. then i dont know when after that.. i dont know why im deficient. Something i shall ask tomorrow. Its all worrying to be honest. What wer your levels when you found out?
    • isabel1
      isabel1 sarah57965

      Posted

      My b12 level was 103.  I had felt tired, my tinnitus was driving me mad, my lips and tip of my tongue were so dry (still are).  The effects of the injections dont last for long so I get mine every six weeks.  If I go any longer I get bad flare ups of IBS and tend to walk into things as my balance and judgement are not what they should be.

      just remember you are not alone and someone here will always give you advice and try to help you.

  • aveline
    aveline sarah57965

    Posted

    Low B12 is low B12 and you don't need a shocking deficiency to have a boatload of ill effects!  

    I had (have, if I'm not careful) so many of your symptoms, including eyes/vision. Halos at night, and spots too. I didn't even know I had shortness of breath until I started recovering and during my daily walks I was nicely surprised that I wasn't winded on hills!  My memory can be spotty on a good day, but I was driving my husband mad before diagnosis/treatment, and muscles, fatigue, weakness, headaches, vibration, dizziness and tinnitus (latter 2 I have anyway, but much worse when my B12 is low).  

    I couldn't believe all of these issues were related! I'm SO glad my doctor tested me...I was afraid it was far worse.  

    HUGS to you!!  Do be sure you get injections, don't let the doctor dismiss what he thinks are high low numbers, they're still low and you're still symptomatic!  GL!

  • lisahelen
    lisahelen sarah57965

    Posted

    There is a dedicated website for pernicious anemia with a forum as well, lots of good advice on society site and many helpful people.
    • isabel1
      isabel1 lisahelen

      Posted

      I agree it is a great website.  I was talking to Martin Hooper who writes the books on PA this morning and he was so helpful and kind. (Didn't expect to speak to an author when I rung up) but I got some really good asvice from him.  Easy to join the society too and so many nice people that make you realise you are not a hypochondriac.
  • caitlin39841
    caitlin39841 sarah57965

    Posted

    Hi sarah.  good to hear you've commenced the B12 loading regime. as somebody else has pointed out, with B12 as low as yours is, you can have a ''shed load'' of wide ranging symptoms from eyes to balance and loads more. 

    after your loading dose, press for 2 monthly top up's from GP.  you can always supplement, orally, sublingually, trans dermally or/and nasally if that's not sufficiently frequent.  

    you will need to find out why you've become deficient too and address any know causes. there are many.

    the web site 'HealthUnlocked' under the 'Pernicous  Anaemia Society' section - PAS has invalauable,  informed  & reliable  information resources/people to help with all sorts of quesries. also the PAS website.  the latter has a phone number where you can ask to be called back.

    in respect of explaining to hubby, you can get him to read the posts on here and on the other sites.  that'll give him any idea of how debilitating this condition can be.   you can also point out to him, that if he has no petrol/diesel in his car is low/inadequate,  he won't be going anywhere fast???  ppl just don't understand the debilitating ramifications of low b12.

    best wishes

    C

    • sarah57965
      sarah57965 caitlin39841

      Posted

      Thanks so much everyone for your comments.. cant wait to feel normal again!! And i will be making sure i get the jabs i need.going to have a very long chat with the nurse tomorrow. Would love to ask my gp why he felt the need to leave me like this since january and only test me when the doctors at a local a and e department wrote to him and demanded he investigate further! Think im going to swap gps.. just hope my neuro symptoms get better ive read some dont.. im worried.
    • isabel1
      isabel1 sarah57965

      Posted

      Unfortunately many doctors dont understand b12 deficiency so they stick strictly to the guidelines but even so your levels were too low.  It always seems to be the last thing gp's think of.

      i do hope you get answers from your nurse and that you feel better soon.  Take care.

    • caitlin39841
      caitlin39841 sarah57965

      Posted

      Hi Sarah. so pleased to hear that things  ARE happening for u at last. and you will feel normal again.  it may take some  time, as the b12 response  is soooooooooooo  subjective.  no 2 ppl seem to respond similarly to b12 therpay. 

      in respect of GP's & b12 deficiency, my expereince  has been that they are 'particularly' lacking knowledge in this area. in fact they are incredibly ill informed about the subject, almost without exception.

      Sarah, do make sure that your Folate levels are on the upper levels of normal as b12 response is dependent on high levels of Folate.  otherwise the b12 therapy won't work.  

      a very good book on the subject is ''Could it be b12'' by Sally Pacholok.

      all good luck on the recovery journey.

      C

    • sarah57965
      sarah57965 caitlin39841

      Posted

      Just to keep you all updated.. i went foe my first jab before didnt hurt like i thought it would. But i asked the nurse if they would investigate further to see why i was deficient, she said no why should they and that these things just happen... so i explained my symtoms and she said no those symptoms wont be from low b12 and that im not even low enough to have symptoms... so after that ive made an app with gp for after my next jab to see whats going on. I know these symptoms are from this but she seems to knoe my body better than i do.. first time ive ever met the woman... fuming is not the word
    • isabel1
      isabel1 sarah57965

      Posted

      Hi Sarah

      so sorry to hear how you were treated by the nurse today.  I can understand how you feel.

      i do hope you can get some satisfactory answers from your gp as no professional should be so dismissive towards a patient.

      if you have time to look on the PA society site you may get help with the sort of things to ask your doctor. I do wish you luckand hope that things get better.

  • lulabet
    lulabet sarah57965

    Posted

    I've been having B12 injections for nearly 2 years. I only have a B12 deficiency and they've checked for pernicious anemia. I was also having a lot of pain in from having my gallbladder removed a year after the op. Having seen a consultant he said I needed to be tested for my vitamin D levels. These were ridiculously low and apparently the 2 go hand in hand. I am now on daily tablets for that too - it has made a difference.

    It is hard about 2-3 weeks before my injections I feel horrible again (my doctors won't let me have them any sooner than 12 weeks!). I had a blood test just before a b12 injection and my levels were normal! So no earlier injection for me!

  • shalu143
    shalu143 sarah57965

    Posted

    Hey Sarah how u feel its 2 years past

    .. I m also suffring from wobbly vision slowly shaky.. How u are now.. I m also b12 defiecint i m on Injection

    • chitra01201
      chitra01201 shalu143

      Posted

      Hi Shalu, 

      How are you feeling now?  We seem to have similar symptoms.  I’m 9 weeks into treatment and still struggling...

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