went to GP yesterday, suffering badly with migraines and peripheral neuropathy plus extreme fatigue and basically feeling the same as I felt before I started on injections.
Last year I told him I was buying the vials from Germany and SI every month. Said I was fine with that but worried in case I can’t get them anymore and would he consider prescribing monthly instead of 3 monthly.
Answer was no, nice guidelines say 3 monthly and never in his 30 year career has he ever prescribed more. So I pushed, gave him the info that we are well aware of on our site and eventually he agreed to refer me to a neurologist. That was 6 months ago.
Anyway. This is the good news bit. On the 20th of this month a peer reviewed article has been published in either the BMJ or Lancet (can’t remember which) that states that GP’s shouldn’t focus on numbers but rather on neurological symptoms. They should prescribe patients B12 injections in the amount they feel relieves symptoms.
the article states (according to my doctor) that oral supplements have very limited efficacy and for neurological symptoms IM hydroxocobalamin is the recommended treatment.
He told me that everything I said last year was confirmed in the article
He did a script for 6 vials, put it on repeat and said I could have more as needed
I do hope this makes a difference to others that are suffering like me!
Written by
Countrylou
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Thanks for the link Jillymo - I'd lost it!! Although had a copy which I took to my last GP appt and she refused to even look at it.... said it was just another article !?!? Grr!
Indeed Jillymo, I know the feeling. At least if we bang our heads on a brick wall we know when to stop as it hurts! I thank my lucky stars daily for the forum and everyone on here. 👍
Also I've lost count of the number of times in 2023 I taken in a copy of the NICE guidelines about EOD where neuropathy presents in a patient, especially in the light of having a formal written diagnosis In May 2023 from the neurologist of Short Fibre Neuropathy which after a raft of blood tests, scan and MRI could only be attributed to the original 2000 diagnosis of PA. Various excuses given: 'it's only a guideline' 'your B12 level is already sky high(!)' 'we haven't the resources to give patients jabs EOD' and so on...... Grrr again! Hence, the 'row your own boat' path followed by so many on here. 👍
Well done @countrylou I tried and failed to get a px for B12 injections.. I said I will SI! My Gp wrote to a haematologist and he referred her back to Gastrology. I was on the deficient side of B12 and and getting symptoms.. I take B12 Complex but it’s not absorbing well! I am IF neg!
I even quoted the NICE guidlines 🙈 and she said I have too much time on my hands 🙌…🙈… (a joke) I am a retired registered nurse..
I have just wasted the last 2hrs trying to get a Drs appt, told to ring 111. They told me to ring the surgery again which I did to be told to ring 111 again, They told me I will have to go through the same procedure tomorrow. 🤬 All I want is an xray.
The best thing about your post, well besides that you are getting what you need, is that your doctor has the ability to admit he did not have all the pertinent information. And that you were right. I feel like kissing him for being such a better human being that most. Some doctors would pretend they had never read the article & not shared it, as gross as that is to type. Or picked it apart somehow.
(Read further, I see that some already have. 🙄)
Happy for you & thanks for the pertinent information.
It made a difference to me that a GP who thought he was doing the right thing for 30 years has just changed his mind ! And agreed with you ! And admitted it !
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Good news on numbers!
Oops, I upset the doctor!
Sharing some 'good' news
I'm new here so I hope I'm doing this right. I
I've got PA and wonder if I need any other supplements other than B12 shots.
