So confused with symptoms

Hi everyone

I am 24years of age and have been diagnosed with b12D and just under going the loading doses now. I caught glandular fever and as result of having bloods found out about my B12. I do not know which symptoms are connected. I have been having aches and pains in my arms and legs and thought it had gone away but it's now back again. Literally feels like sometiming is moving down my arms. The arch of my right foot seems to be constantly numb and have a cramping like feeling. I don't really know what to think anymore with it all. Just when you think your on the mend your back where you began. Does anyone else experience anything like this?

Thanksss x

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  • Hi,

    One of the things I found helpful is to always get paper copies of any blood results. There were times I was told results were good or normal over the phone and then found out they were not when I got paper copies. There will probably be a charge for this.

    Aches and pains can be associated with B12 deficiency. Do you have any neurological symptoms?

    The reason I'm asking is that the treatment for B12 deficiency with neurological symptoms is more intensive.

    pernicious-anaemia-society....

    PAS Head office: 01656 769 717 You can leave a message and they will get back to you.

    Lots of useful info in the library section.

    There are useful symptoms lists on the following websites as well.

    b12d.org

    b12deficiency.info

    If you have neurological symptoms then your GP might want to check their copy of the BNF (British National Formulary) Chapter 9 Section 1.2. The BNF is copyrighted.

    I think patients with neuro symptoms and B12 deficiency are supposed to have an injection every two days until they stop improving followed by injections about every two months.

    Once you are supplementing with B12, results of other B12 tests will be affected.

    Did you have any other tests to see why your B12 was low? eg Active B12, MMA, Homocysteine?

    Did they test your IFA (Intrinsic Factor Antibodies) as this can help to diagnose PA (Pernicious Anaemia) although it's not the most reliable of tests.

    If you had a full blood count test recently it may be helpful to get a copy of it. Have a look at the MCV and MCH result. High MCH and MCV can indicate a macrocytic anaemia. Low B12 and /or low folate makes your red blood cells larger. Low iron (ferritin) makes your red blood cells smaller. If you have both low iron and low B12 then your red blood cells might appear normal.

    Google the "BCSH Cobalamin and Folate guidelines" which were updated in 2014. Have a look at page 29 which is a diagnosis flowchart.

    Other useful documents

    ukneqas-haematinics.org.uk/...

    bmj.com/content/349/bmj.g5226

  • Yes, it is quite common for people to feel that the pains etc have got worse when they first start - I don't know if this is correct but I think of the brain as being like someone listening to the radio when the reception is poor - the volume has been turned up really high ... and then suddenly the signal starts coming through a lot stronger and that can be quite painful ... or you notice things that you haven't noticed for a while.

    B12 is essential to the maintenance of the protective sheath around your nerve cells so signals just don't get through properly when you are B12 deficient because the insulation isn't there and they leak all over the place - it takes a while for the damage to heal so what you are probably feeling is the signal getting stronger but there is still a lot of leakage going on. As the repairs are done this should get less. I know I remember experiencing lots of funny sensations that I hadn't had for years - possibly even decades - when I got my treatment levels right.

    As Sleepy Bunny says below (and assuming you are in the UK) there are two recommended regimes for treating B12

    - one where there is no neurological involvelement (roughly loading shots every other day for two weeks followed by maintenance every 3 months

    - if there is neurological involvement it is shots every other day until no improvement (review after 3 weeks) followed by maintenance every 2 months

    doctors often aren't aware or don't think through which regime you should be on - you clearly have neurological symptoms so should be the second - so worth talking this through with your GP

  • yes everything that gambit62 said.

    I felt similarly when i first started treatments. Also i had a flush of anxiety for about a week. Feel fantastic now. "booster" shot every week or 2 dependng on how I feel.

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