•For patients with neurological involvement, referral to a haematologist is recommended. Initial treatment is with hydroxocobalamin 1 mg on alternate days until there is no further improvement, after which 1 mg should be given every two months for life.[2]
So go back to GP, ask why you are not getting the above mentioned treatment after explaining your new symptoms and how much better you were initially seems to me the right thing to do, walk out the door mat at the surgery!
Thanks for the advice. I was already thinking of going back to the GP and I think your suggested approach is very good. I will get an appointment booked.
It did surprise me that the GP did not seem interested in how my symptoms were improving after the loading doses. They did another blood test which showed my b12 at 1683 ng/l (191-663). I got a phone call from the receptionist to say the test was OK and that was it. I knew then that they should continue until neuro symptoms stop improving but it seems they do not follow this methodology! From what the nurses have said I also get the impression that they stick with 3 monthly injections regardless of symptoms.
However having read some peoples experiences on here I do count myself lucky to have been diagnosed and treated within a month of the first appointment. The level of ignorance in the medical profession about proper treatment for b12d really is shocking.
Wishing you good luck with your appointment! if your GP refuses to follow BNF guidelines for neurological involvement then your next step could be to ask for a referral to a haematologist, who will know more and should be of more help,
Been to the GP today and explained the situation as you suggested.
I was all ready to ask for a haematologist referral as you suggested but he quickly offered a neurologist referral and I thought that could be useful too.
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