Unbelievable

[Nackapan]

G.p said to try and get onto 3 monthly injections now!! She was the one than reinstated every other day ! So thought the one to see. It was agreed by neurologist and another gp to go at my own pace to get to 2 monthly injections. So confusing. She then did say to go at own pace . So left it at that. Amitriptyline trial over . Going down to 5mg then stopping. I think it gave me more sleep . Certainly slowed me down even more which I didn't need and had 2 day long headaches but not a nasty migrain .so not a real test as the nasty migrains happened when I tried to do more like giving in a shop. Also the waiting room at the hospital where I was expecting a quiet dim room with perhaps whale sounds in the distance was infact on a main modern thorough fare with a high screen like a railway station .(the day before) The very sort of environment I've been avoiding. Then gp offered another antidepressant! Why oh why. I'm not actually depressed but this one helps calm the brain apparently. Once off amitriptyline not taking anything for a while so I can guage b12 frequency of injections needed. I have a strong feeling that once reduced will not be got back. It's so tricky . It's so suprising that no comment to actual symptoms apart from I've been ill for too long now! At least she did the blood form and didn't put b12 on it!! She didn't agree with last neurologist so 3 got different views now. Great! She does want to see me in 3 weeks though . No interest in reason I'm not absorbing b12. It's no wonder we all end up getting so frustrated trying to get help to function or at least understand more about b12.

[Hidden]

Call me cynical Nackapan but her encouragements to get your injection frequency up to 3 months might have more to do with expense than necessity. We tend to see this magic elixir Hydroxocobalamin as a very inexpensive drug, which it is if we are self injecting at a cost of about £1 a time, but it is much more expensive to the GP who has to pay the pharmacists dispensing charge and profit margin as well as the practice nurse for doing it.

It would be interesting to see if there is any different view taken by GP's who also have B12 deficiency where they have first hand experience of the condition: their view may be less likely to be a narrow interpretation of guidelines and licences than ones who aren't sufferers.

One fact has surprised me and that is a prescription is issued by the GP for a single ampoule for every injection done at the surgery and this is then obtained from a pharmacy. I had expected the surgery would have had a stock of these things but it seems not. It looks like the accounting procedures are more important than clinical need or expediency.

It is still possible to get supplies from Germany as I found out just last week. Bofeld-Apoteke have an English version of their website and I got 100 ampoules of Vitamin B12 - Depot 1mg in 1 ml for 72 Euros including DHL courier. It took just 4 days to arrive. Although I do speak and read German sufficient to manage quite well with friends there I do find some things beyond me, but there is another marvellous tool to help with this in Google Translate. By using Copy and Paste you can get the things you are unsure of or don't know translated as you go. (Control+C to copy, Control+V to Paste, note Ctrl is the Control key if you don't already know).

I thought it prudent to replenish my rapidly dwindling stock as the cliff edge of 29th looms ever larger. I would rather be over stocked than feel an April Fool if HMRC get involved afterwards and ordain that the fact Of our drug being freely available in Germany doesn't have any validity anymore as UK rules are that injectable drugs can only be obtained by prescription here.

[Nackapan in reply to Hidden]

Yes that must be worrying alot of people. Thanks for the information.