I have stopped injecting every other day as I was seeing no further improvement. My GP reckons the 8 weekly injections means I should be drowning in B12 by now (good thing he did not know I was self injecting every other day). He sent me to a neurologist that said my reflexes are a bit sharp but then said I am not concerned about that (personally if there is an abnormality I would be adding that to the jigsaw). I have had blood tests for so many things but most have come back normal. The MMA and lupus bloods have not come back yet. My ANA is raised which can be a sign of something autoimmune going on, but on its own is not taken much notice of. Yesterday I had an MRI of my head and c spine - the biggest nightmare of my life - tears and hyperventilating. So just waiting to hear from the neurologist but with a million bloods coming back normal I do not think there is going to be anything to see and I will be fobbed off again.

I received a reply from Gloucestershire trust about my complaint. The gastro has denied saying he said my levels would not produce symptoms and his consultant has said he does not believe his registrar would say that so clearly I am being called a liar. No mention of his comment re H pylori being a normal bacteria that will not harm me and mas nothing to do with B12 def. The haematologist sticks with his decisions and of course the trust will not suggest any different - Gloucestershire guidelines are so out of date. I have decided that fighting is pointless and making me ill so have given up trying to make them see they are wrong.

My son has been prescribed B12 tablets and when I argued they will skew the blood results the GP said no more than injections - well done that is why guidelines state do not retest once on injections. He is refusing to take them. While at the GP I mentioned his diet of junk food and he immediately said that is what is causing the B12 levels to drop - no this has been going on years and the diet is a recent thing. The GP asked if I had swapped surgeries because I was not getting what I wanted for my son at the last surgery, so clearly now he is determined to say exactly the same as the last surgery. I can't swap again as it will mean travelling to see a GP and with my tight schedule while doing my degree that is not a possibility. Not sure how to make the GP see that my son needs treatment. He also did the Romberg test on him and he fell the he stoked him with cotton wool and my son could not feel it mos of the time. He saw the tremors in his hand then said it is very borderline we will wait and see what mum's results are before I refer you to anyone. So if I have a genetic condition he will refer but if not will ignore the symptoms? My son is an individual and should be treated as such, he should be referred to a neurologist but again the GP seems adamant that is not necessary.

Anyone managed to persuade Gloucestershire that they need more/better treatment?

5 Replies

  • Hi,

    "He also did the Romberg test on him and he fell "

    Are you both PAS members? Is there any chance that the PAS can help? Office open from 8am till 2pm every day except Sundays. Costs of membership are changing soon...at the moment it is £20 for lifetime membership but will increase soon.


    01656 769 717

    Stories on Martyn Hooper's blog about how PAS has helped some people.



    Can your MP help?

    Have you contacted the person who runs the B12 Deficiency Info website?


  • Well your gp has, by himself found the cause of the upsurge in b12d - its junk food!!! If only!!! Talk about clutching at straws.

    As s/bunny suggests, could you try to get Martyn onboard to help?

  • Gloucestershire again, as you know. I have had much the same trouble here. My GP's are adamant about using the Glos. outdated guidelines (2005)

    Which neurologist did you see - private message please.

    Martyn Hooper said he would write for me, so perhaps he would for you. Sorry I can't be more helpful.

  • Thanks for your replies. I will have to look up which neurologist I saw (he listened more than gps and looked at my diary of symptoms and referred to them in the letter he wrote to my gp, my gp refuses to look at it). I will look tomorrow, right now I am shattered after a long, busy shift. I have emailed PAS a couple of times about glos guidelines and heard nothing back. I will have to try again. Yes I am in touch with woman from b12 def info.

  • I really feel for you, sleepypuss.Please don't give up self injecting. I don't know how long you have been doing every other day but many people say it can be 18 months before they see noticeable improvements. I have just had the results of my MIR - nothing that could cause my symptoms. I still have to get results of nerve tests. I know it is frustrating but having neuro symptoms and a history of b12d when it is well documented that b12d causes Neuro symptoms is just too coincidental for me. Going back to 8 weeklies is just not an option.

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