Thanks to the people and information here which helped me persuade him:
a) to give me 2 injections this week even though they are not "due" til February.
b) to show me how to self-inject intra-muscularly
c) to consider letting me have injections every 8 weeks rather than every 12 and
d) to test for Vit D and Calcium in case of other deficiencies.
I have been having more and more ankle pain, increasing by the day, and spent 4 hours in tears on 1st Jan (irritable, anxious, depressed ... or maybe just because I've been in pain and unable to sleep for 2 weeks, who knows).
So, I'm really cheerful now, my Dr was very cool, and THANKS to everyone for the links and encouragement for me to put together the case for more frequent doses (plus if I can self-inject, I shall feel far more in control in future..)
Big smiles...and good luck to everyone else facing the task of persuading a GP (mine said 'no' last week, so the info and prep made a difference as well as his attitude...)
Mashie
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Mashie44
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That's brilliant Mashie44. And if your wonderful GP somehow disappears and your B12 supply dries up (how bad, but it happens) there's an added bonus because you'll be able to buy your own B12 and carry on self-injecting.
I think he is a good GP and that's most of the battle. I took a printed page of snippets from this site, with references:
-The British National Formulary (Section 9.1.2);
-NICE CKS, July 2015 on "Referral" and "Complications";
- BMJ 2014; 349:g5226 "If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features"; and
- British Journal of Haematology 10.1111/bjh.12959 on behalf of the British Committee for Standards in Haematology: Guidelines for the diagnosis and treatment of cobalamin and folate disorders
"The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status because there is no ‘gold standard’ test to define deficiency.
I started by saying maybe I hadn't explained what I thought was going on, explained why I think I have neurological symptoms and took him through this sheet of guidelines. I reminded him of the spectacular 'instant walking' cure that B12 effected in September and asked if he could explain it in any other way (symptoms are now recurring). I think it was convincing that I talked sense and had done research (thanks to this site) and maybe he is bored seeing me (I'm certainly fed up getting appointments...). He was very nice.
Are you in the UK, Just interested in GPs who are prepared to listen
I am a member of the Patient Group of the Royal College of GPs, and am currently planning a possible session for the next Annual GPs conference in Oct. No idea whether it will be accepted yet, but is the patient perspective on how GPs deal with patients who inform themselves on the internet, and know more possibly than their GP. There are lots of negative experiences around but a positive one might be useful. I won't know for a while, but may be back later on. Hope all goes well for you
Thanks Chris. I'd be happy to contribute if your session goes ahead. I'm a former academic and I think the GP knows I will research anything he says and is fine with it. I was careful only to use highly-respected sources speaking to him and I think he can tell I understand things pretty well. I am also genuinely respectful both of his being a medical professional (which I'm not, I'm a mathematician) and of the fact that he has little time and can't be an expert on everything. My job has given me experience in presenting and explaining and that may help - but I think it is down to the GP really (as it should be, treatment ideally shouldn't depend on how the patient presents things).
That's really useful. It helps if the GP knows you and trusts you. I thought I knew mine, but he was very dismissive when I mentioned what I had read in NHS Choices 'who writes this stuff'
I will not know whether it has been accepted until Marchish, and we have to compete with all other submissions from GPs etc. 2 yrs ago we had 3 ringfenced sessions for patients but they have changed how they do it. Will be back once I know.
This is great that you have a supportive doctor. I have just made a breakthrough with mine too, and it is a fab feeling. Although still a long way to go, it feels as though you are getting somewhere!
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