good news, I hope this helps others - Pernicious Anaemi...

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good news, I hope this helps others

Countrylou profile image
20 Replies

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!

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Countrylou profile image
Countrylou
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20 Replies
Nackapan profile image
Nackapan

What good news .Is it the article ftom Addenbrookes doctor ?

Pity your G.p couldnt have prescribed on need last year.!

Better late than never though.

I'm hanging onto my NHS prescription.

It has however been challenged many times.

Hope my old G.p gets recognition ftom her peers now .

They opposed her prescribing my b12 even refusing to sign the repeat prescription if she wax not on duty.

I need to get s hard copy of that article incase needed .

Narwhal10 profile image
Narwhal10

Hurray, great news and amazing the power of an article in a medical journal.

🤓

Jillymo profile image
Jillymo

Well done for standing your ground. 👏

Lets hope this is one of many changes with regard treatment.

Here is the link for the said Dr............

cuh.nhs.uk/news/expert-call...

JanCymru profile image
JanCymru in reply toJillymo

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!

Jillymo profile image
Jillymo in reply toJanCymru

Your welcome.

I have spent all day trying to get through to my Gp ! It's enough to drive us all do-dally. 🤬

JanCymru profile image
JanCymru in reply toJillymo

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. 👍

Love2118 profile image
Love2118 in reply toJanCymru

That’s BS that she did that to you !! Grrrrrr is right !!!!! 😡

JanCymru profile image
JanCymru in reply toLove2118

I know, unbelievable!

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. 👍

Doris11 profile image
Doris11

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..

Countrylou profile image
Countrylou in reply toDoris11

I am also a retired RN, see if you can find the article and take it in, it convinced my GP 🤔

Doris11 profile image
Doris11 in reply toCountrylou

Thank you wil,print and post to Gp 👌

Jillymo profile image
Jillymo in reply toDoris11

Hi Doris11,

I have posted the link on a reply to Countrylou. 👌

Countrylou profile image
Countrylou in reply toJillymo

I have found the brilliant article! It would be difficult for a GP to dismiss this article and I hope it gets results for anyone suffering,

bmj.com/content/383/bmj-202...

Jillymo profile image
Jillymo in reply toCountrylou

I do hope so but some Gps will try to dismiss it.

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.

OMG the world has gone stir crazy.

Love2118 profile image
Love2118 in reply toDoris11

They don’t pay attention to patients as much as they should, its crap 💩

Litatamon profile image
Litatamon

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.

Cherylclaire profile image
CherylclaireForum Support

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 !

Yippeeeee !

Countrylou profile image
Countrylou

I know and I hope he changes his approach to other patients and discusses my case with the team

Kazania profile image
Kazania

wow! That’s an excellent result👏👏

Love2118 profile image
Love2118

I saved the article thank you sooo much for this information!!! ❤️

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