Wish me luck!

[auntieb]

Got my docs appt in the morning. Asking for B12 jab early (a whole 4 days - whoo) But I'm also asking if I can have it monthly and self inject. I've written my letter, with some help from you guys and the information here and on the PAS site. Keep your fingers crossed for me

[wedgewood]

My fingers and burning toes are crossed for you !

[clivealive Forum Support in reply to wedgewood]

That must make typing difficult wedgewood

My toes might smell but they certainly can't spell

[Sleepybunny]

Good luck auntieb,

If you're in UK and have B12 deficiency with neurological symptoms, you should have had loading injections every other day until symptoms stopped improving followed by an injection every 2 months.

See "BSH Cobalamin and Folate Guidelines" Info on UK treatment about a quarter through document.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 or put "cobalamin and Folate guidelines" in search box.

[auntieb in reply to Sleepybunny]

Thanks Sleepybunny. I am in the UK but I have had PA for 38 years. I never gt any loading doses initially. I got one injection when I was in hospital and they sent me home and omitted to tell me that I woud need them for the rest of my life. So I just carried on but of course I soon got ill again. When I went back to my GP he delivered the good news,, and for many years I was on monthly injections (and self injecting) and coped reasonably well. Then they changed it to 3 months and said oh no, you can't self inject anymore. Since then it;s been a huge struggle. But I had a little victory today! I'll do an uodate below so everyone knows

[Foggyme Administrator]

Good luck Antibe. Everything crossed. Let us know how it goes 👍

[pitney]

really good luck hope it goes well

[jillc39]

cant wait to hear how it goes.... good luck!

[MariLiz]

Good luck with that. My GP agreed to six weekly injections which have helped me a lot. It means they are treating you " off licence" if you get more regular injections. So if you develop any problems they could get into trouble for doing so. I asked for a trial period first, to prove how much better I was. Maybe that approach would work for you?

[catherinejordan]

How did you get on?

[auntieb]

Hi Everyone

Well firstly I'd like to thank each and everyone of you for taking the time to post me a good luck msg. I didn't have time to login till now but I kept getting notification emails to my ohone so I knew you guys were all there for me and it meant a lot. Thank you.

Well I'm pleased to say I had a little victory.

I wrote my letter with the intention of telling the doc what was in it and giving it to her to take back for the whole practice to read. Mine is a group practice and you can see any doctor but I do tend to ask for this particular one because she is nice and seems to listen a bit better than most of them.

So I started by asking her of she would do my B12 jab even though it was 4 days early. I told her I'd had a dreadful couple of months and I just couldn't cope anymore. I showed her my wrist that I rather spectacularly scalded on Christmas Day and said this is just one example. I fear that one day I will really hurt myself or someone else. I told her I hadn't driven my car in more than 2 weeks because I just did noit feel alert enough. And that wasn't acceptable because I have elderly parents that rely on me to do things for them. I outlined all of the symptoms I had and even stated that blood clots were a vascular symotom and I now had one in my left leg, which could possibly be related to my B12 levels dropping. I said enough was enough, I wasn't prepared to be lumped into a guideline anymore. I wasnt my B12 monthly and I want to self inject again. I was asking out of courtesy and because I would rather have the support of my medical professionals behind me. But,, if the answr was no, I intended to source my syringes and ampoules online and carry on with my treatment as I felt I needed.

So she said no, she did not want me to be buying the B12 from other countries online, she would rather I be supported by them. She said how do you feel if we go to monthly, but here under our supervision. If there is a definite improvement in your symptoms, we can continue. If not we will revert to 3 monthly?

Of course I agreed to that, because I know there will be an improvement, and I am happy to let them monitor it for the first few months at least. Once that time is up I will push for the self injecting again. Because (as I told her) I did not want to be a strain on surgery resources.

So I'm quite happy with that. I did include a link in my letter to the excellent video I watched myself. youtube.com/watch?v=BvEizyp...(Not working as expected?)

I suggested that the practice as a whole should watch it as a training exercise because it explained exactlky how serious B12 deficiency can be. I did get a bit of the,,, Oh well the guidelines say 3 monthly is sufficient,, and I stopped her short and said no, I'm sorry, I don't know who came up with that ridiculous ruling but they obviously do not have B12 deficiency, noir any experience of it first hand. Only someone who has it can tell you how it affects them and everyone of those people are different. 3 months is fine for some, others need it more often. It is water soluble so it doesn't matter how much you take. Any excess is excreted in your waste system. So why should it matter if you have it more often unless it;s about money? and even that is a ridiculous argument because it is less than £2 per shot. And as I said, I am happy to buy it myself. There was lots more but I've prattled ling enough. If anyone is planning on seeing their doc and would like a copy of my letter to tweak for themselves just message me and I'd be happy to share.

And once again, thanks for your support. I'll keep you posted as to how things develop!

[greenbexy in reply to auntieb]

So glad I've come across your post, only got diagnosed just before Christmas. I've had my loading doses but no difference, not noticeable anyway! I will go back to my GP to see what he says this time with my Husband in tow to back me up!

[auntieb in reply to greenbexy]

Good luck, yes it;s a good idea to have someone with you. If you think I can help in any way, just give me a shout.

[auntieb]

Thank you