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Pernicious Anaemia Society

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help please need some information

ayrshirelass13 profile image
8 Replies

had a phone call from doc not my own doc informing me that no injections will be give i have autoimmune pernicious anemia plus few other heath problems .told me it not life threatening as i got told 20 y when. i got told that i can store b12 up to a year tried to tell him i do not have the intrinsic factor to do that but was told that all silly it old new . in his words this was an open discussion . but refused to listen to what i said . he gave me 100mcg of vb12. which we all know is a complete waste of time . so sent him a letter today underling from here about how important it is for us to have b12 injections and how we understand this is a very difficult time and he could try 1 to 2 g . i think he put it straight in bin but long story short sorry about rant. wounder if any one could private message me on where and how to buy the stuff meaning needles syringes and of course vb12 .i will try one more phone call to my own doc if i can get him. then i will go down self injection route or even pre loaded injections. thank you so much

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ayrshirelass13
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briarhillcat profile image
briarhillcat

Hello. Same here with my GP, so I have got all the needles, B12 and swabs etc, and am doing it myself. Have been practising on an orange. Good luck.

ayrshirelass13 profile image
ayrshirelass13 in reply tobriarhillcat

did you get them on line or from doc and if you got online can you private chat me where thank you for you answer

briarhillcat profile image
briarhillcat in reply toayrshirelass13

Hello, there are several places you can get B12 injections. Do you usually have Hydroxocobalamin 1mg x 1ml? There are different doses from different places. I got my from versandapo.de (I use Hydroxocobalamin 1mg in 1ml. This company's language is only German, but I just highlighted what I did not understand and then went to the translation site on Google and pasted in it and the English version came up. (there are some that only deliver within their own country due to Covid 19. I am assuming that you have a computer so if you go to Google and type in Germany companies B12 injections there will be a list. When I ordered from versandapo.de I paid for them through my Amazon account. I think they do paypal, or card as well. You have to trawl through the site to find it. The box looked different to the ones I get from the doctors, but they are the same. My needles I got from Medisave. Again, there are different size needles. I have the green ones to draw up the solution and then swop to the orange one for injecting as this one is thinner. I also ordered swabs from them. I have been practising on an orange. Also, there are videos on line to show you how to self inject and I have something I printed off as well from someone on here (cannot remember who). I know it all sounds scary, but so many people on here are doing it themselves and have done for years. Hope this helps a bit. If you need anymore help let me know and I will do my best to help you. Good luck.

ayrshirelass13 profile image
ayrshirelass13 in reply tobriarhillcat

thank you so much i have phoned today asking to speak to an other doc so hopefully he will be willing to help me i not i will give that site a go thank again you have been so help full

briarhillcat profile image
briarhillcat in reply toayrshirelass13

You are welcome. Good luck. If you cannot get them to do it. You do have plenty of options. Let me know how you get on. briarhill cat. Meow Meow !

briarhillcat profile image
briarhillcat in reply toayrshirelass13

Hello, if you look past the information I just sent about where to get things from, I have copied and pasted how to self inject. Hope that helps, just scroll up past my reply . Good luck.

briarhillcat profile image
briarhillcat in reply tobriarhillcat

Hello . I think my information how to self inject has been removed, but you can get the information on the web There are also videos to watch.

fbirder profile image
fbirder

Write to your doctor. Include these guidelines from British Society of Haematologists - b-s-h.org.uk/media/18259/bs...

Explain that you are worried about irreparable nerve damage if your injections are stopped. cc: the practice manager, your local MP, the local press, radio and TV.

Stories about this are appearing in the national press and it's possible that some other media might take interest in your tale.

At the very least the practice manager will be pooping their pants if they think the media might attack them for being heartless bastards.

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