Hi, I'm Kirsty. I was diagnosed with PA last year but had the symptoms of it for far longer. Was given the initial loading dose which made me feel absolutely amazing- I felt alert and had the energy to face the day for the first time in a long time. Since then, my doctor has put me on injection every 12 weeks. I don't think it has any impact. I'm not coping at all. I'm so low, I can barely function, I drag myself to work & then crawl back into bed & any type of social activity leaves me exhausted for days. I have these constant insufferable headaches, awful memory & brain fog. I've been back to my gp with all of this and suggested the idea of increasing the frequency of my injections. She maintains that overdosing on B12 can cause heart problems etc & that the practise maintain their recommendation of 12 weekly doses.
I need to take action into my own hands. Does anyone know of any London doctor who is willing to offer more frequent doses- I'm considering changing my GP. Alternatively I would really appreciate any advice on self injecting or alternatives. Especially where patients source their medications & trustworthy sites, helpful books/literature would be great too.
Thanks in advance.
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kcintherye
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The reason I'm asking is that sufferers with neuro problems should have doses on alternate days until they stop improving then maintenance doses every two months.
Information can be found in the BNF (British National Formulary) Chapter 9 Section 1.2 ( or is it section2.1?) All GPs will have access to the BNF. BNF is copyrighted.
I had the exact same experience when I moved areas and changed doctors. My previous doctor had agreed to give me monthly injections and I felt really good with this. BUT, my doctor,or should I say doctors because there are several in the practise refused absolutely to follow on with this .I pleaded ...no success.
I had a few experiences of not even being able to get out of bed.
Whilst on holiday in Thailand I had a B 12 injection and informed the doctor of my dilemma .I was having the injection about3 days before it was due and I asked if I could overdose on B12 .NO ,absolutely NOT. If I had a B12 that was over the recommended dose my body would just secrete it (HOW? It would just secrete in the form of urine! ) it seems you CANNOT overdose ,it,s a vitamin not a drug.
Last year I was admitted to hospital with chest pains...was it lack of B12?
Don,t know but whilst I was there I explained the situation concerning B12 .
At last!!! A doctor who listened and sympathised.
Do you know what he told me to do .
He told me to source my own B12 and added that the 3 monthly guide line is a Government recommendation NOT a medical one,just down to funding.
I did exactly what he advised .I looked on the Internet and ordered B 12 ,plus needles an phials.
B12 was from KohlerPharma GmbH.this was from Germany.
I think it is also called Gold Pharma .
The other things necessary are from booth@mediquip.co.uk
All these items came very quickly ands very reasonably priced.
I would not hesitate in just sorting yourself out.
I still have the 3 monthly at the surgery and my friend( an ex nurse) gives me the others in the 2 months in between. ...Sorted!!!
I get my b12 ampules on prescription from my GP (as like most GP's they will not give them more frequently than every 12 weeks), I got my sharps box, alcohol swabs and syringes from Medisave. I have cleared it with the district nurses and my GP that I am more than happy too give myself my injections when I need them. When my sharps box needs changing I take it too my surgery and they swap it for a new one.
If I'd known how easy it is too self inject I would have started doing it years ago.
Hi Kirsty, are you on Facebook? There is a helpful group there, with videos on injecting and also in the files you will find details of suppliers of b12 and equipment, needles etc. I found it very helpful when I started injecting.facebook.com/groups/PAB12DS...
I do agree with the previous poster, that ideally you should present your doctor with some evidence about why he should be offering you more frequent injections - if only to educate him/her to help other people! There is also plenty of information on that subject on the Facebook page too. I decided to inject because I didnt want to be at the mercy of a doctor saying yes/no to treatment I felt entitled to. It was nerve-wracking at first, but gets easier. Good luck!
Hi Kirsty, you're saying you were given 'the'initial loading dose. Does this mean you were only given 1 dose? Guidelines are for 5 over a fortnight followed by every 12 weeks, if no neuro symptoms, or 1 every other day until no further improvement (and that can be months) followed by 1 every 8 weeks, if presenting with neuro symptoms (and you sound as if you ARE) And THAT advice is most certainly available to all GP's. They ignore it, but it is easily available to them. Sleepybunny has given you the links you need. Print them off, rattle them under their noses, insist they read them, tell them that you require SOMEONE to take responsibility for your worsening symptoms (politely, but don't be fobbed off), remind them that the treatment for cyanide poisoning is a dose of B12, 5000, five THOUSAND, times larger than the standard loading and maintainence doses for PA or B12 def. Your GP is ENTIRELY wrong about overdosing, it simply can't happen. Your body would pee out what you don't need.You have a huge battle on your hands but if all else fails, you can eventually go down the route of self medicating and if you get to that point, lots of help is available here, but in the meantime, try to stick with things until or unless you feel you've reached the end of the road with your GP, because self medding will skew any results you DO get them to undertake.
Good luck, we have managed to bring about a change of heart, and understanding, in our GP by simply plodding along every 5 mins with new and worsening symptoms and left him with a pile of information (the stuff sleepybunny is listing). He rang us to say he was only too happy after that, to refer us AGAIN, hopefully to a haemo who knows what they're talking about. What happens if he/she doesn't will have to be seen but we'll give you all an update as soon as we can
sleepybunny thanks for the information. I think I need to read this too so that I'm confident about it when presenting it to the GP. Knowing what the GPs are supposed to know will help me fight my case.
Penni your GP seems great. Mine won't give me a prescription for B12- I get a free one every 12 weeks (they have it available at the surgery).
Shevie, I had 6 loading doses over 2 weeks initially & I bought them on prescription as I didn't get my medical exemption card yet (I also have another autoimmune disease. I was treated with radioactive iodine for Graves Disease & now take replacement thyroxine).
Chalkygirl I am a member of the group run by Pat Kornic. Sometimes the advice & experiences can be so varied I get a bit lost. But you're right, it's a relief when you hear that others are struggling with this too and are finding ways to cope.
Shevie you are right, the best thing to do is be persistent with the GP & present them with what they should know. Thomas1944 thanks for the info on buying medicine; I'll self inject as a last resort but just concerned about buying meds online. You hear about so many rogue online drug stores so I'll definitely check out your sources when the time comes.
I'm so foggy that this seems like to much to deal with but I'll have to get a hold of myself in order to get right again.
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