On B12 inj 8 weekly but worried I might have MS

Have short bowel syndrome and have had the terminal ileum which manufactures B12 removed. Also hypothyroid and osteoporosis . At the moment I am in a cast for my third stress fracture . ATM my my head is spaced out, brain fog,,electric sensations in my hands, numbness and tingling in both hands as well as permanent electric shocks making my hands shaky, weird body jerking, unsteady on my feet leading to falls. I have malabsorption syndrome so diet is predominately chocolate tea and toast. I have not yet managed to find a Dr to look at the whole of me. Would be grateful for any suggestions as I am so afraid that this is what life is going to be like. Thanks in advance x

2 Replies

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  • cezzie, with malabsorption syndrome it seems to me that you should be under the care of a dietitian at the very least to fulfil your nutritional needs. Your GP should be referring you or you could surely start the ball rolling yourself somehow. A diet such as you describe must lead to multiple deficiencies in addition to any which are the direct result of malabsorption syndrome.

    Without an ileum you must have B12 injections: you are having those but are you having enough? Many of the symptoms are seemingly those of B12 deficiency in that they are neurological.

    Are you and your doctor aware that in the case of neurological symptoms B12 injections follow this pattern:

    British National Formulary. Under Hydroxocobalamin.

    Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1mg on alternate days until no further improvement then 1mg every 2 months.

    Please notice the important "until no further improvement" as you seem to be very short of B12 judging by your symptoms.

    Being an ex-nurse you will know about the British National Formulary and the website:

    bnf.org

    where you can print out relevant sections you might need. The British National Formulary can also be bought on Amazon by anyone.

    In the September 2011 edition I have on:

    Page 61:

    Malabsorption syndromes

    Individual conditions need specific management and also general nutritional consideration. Coeliac disease (gluten enteropathy) usually needs a gluten-free diet and pancreatic insufficiency needs pancreatin supplements (section 1.9.4)

    For further information on foods for special diets (ACBS) see Appendix 2.

    In Appendix 2 there is much information for you. You really need a copy of your own to browse and find out what might apply to you.

    If you are not already in the Pernicious Anaemia Society then you can join them:

    pernicious-anaemia-society.org

    and as a member you have access to the helpline's medically qualified adviser.

    B12 deficiency symptoms are too often confused with MS symptoms and those of many other neurological conditions so focus on restoring your B12 levels first via your doctor.

    If he is difficult about this then B12 can be raised by use of sublingual tablets from Amazon using sublingual dosages of 30000mcg daily which are the equivalent of two B12 injections weekly, according to sources on the PA site. Sublingual B12 sprays delivering 500mcg per spray are also on Amazon, but your special needs must be taken into consideration of course

    Good luck!

  • Hi nostoneunturrned

    Thank you for your very comprehensive reply back and apologies for my delay but been in bed with one of these horrible virus's.

    In 1984 when i first had the surgery done i was put on B12 inj 4 weekly for years, Then the lovely Professor Leonard Jones retired and new consultant said new research highlighted that you only need inj every 3 month's. My body found this too long in that i kept getting megaloblastic anemia as well as all the physical symptoms that go with this so my GP and i have agreed on 8 weekly injections although even this is still too long, however as i self inject i sometimes have 1 mcg inj every 6 weeks even with this i still get megaloblastic anemia.

    My main problem is finding just one Dr. who will look at me holistically and see if he/she can separate all my ongoing symptoms out and know what causes each. For instance the thyroid never gets a mention, nor do my B12 levels, The last blood test in Jan 2010 showed low T3 levels, i was put on 20 mcg's and it's not been looked at since, so how can a GP possibly know what's causing what.

    I live in Weymouth, Dorset so if anyone knows of a good specialist in thyroid disorders or a holistic approach, please let me know.

    Just a small point, what is the difference between macrocytic and megaloblastic anemia or are they one and the same?

    Thanks for such a great web site, learning so much about these horrible diseases and how they afflict us all, stay strong everyone.

    Hugs

    Cezzie x

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