Pernicious Anaemia Society
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Gradual decline

I now find myself two weeks away from my loading doses and starting to feel myself getting through the days again instead of living them. Every morning I get up and find myself singing 'the sun will come out tomorrow ' as I pop my folic acid, berroca tablet and have a couple of sprays of b12. A while ago someone posted asking if b12 injections were addictive. I'd say no but the desire to be well is addictive and when I go for my next jab if the nurse said no , I think I'd probably go bonkers! I don't want the sun to come out tomorrow I want to be belle in beauty and the beast and have adventure in the great wide somewhere !!😝

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I just realised I put loading I'm two weeks away from first three monthly after loading!

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Av42 - if you want to edit your post you can do this by using the down arrow next to the follow post button

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Thanks I'm not good at all this !

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:(

Any reason you don't Self-inject?

I've just spent a day organising my self-injecting supplies, not easy with this brain fog but I managed to order the B12 and folic acid from germany & got most of the rest of the kit lined up ready to order tomorrow.

It's taken a lot of searching and reading and spreadsheeting to figure out what's best for me, and I'm a little concerned I didn't get the optimal stuff after discovering mthfr.net which I think mine could be that which means Methylfolate may be better than folic acid according to some, and Methylcobalamin maybe better than Hydroxocobalamin, which is what they give you here but since the stuff from the docs did work in the loading dose I guess it's gonna be ok. So much to learn on the DIY NHS bus lol!

Am certainly not looking forward to having to self-inject but from reading the comments of everyone who self-injects compared to those who don't, the decision was pretty simple.

I went back to the docs after I "fell off the wagon" and managed to get them to give me a second lot of loading doses, had one last thurs and next one isn't till tuesday, so when that lot runs out I'll be on my own.

Being in control is key, don't sit around feeling ill, and there's places around which'll help if you can't afford the stuff.

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I'm also reading a lot about the folate levels and if you're just getting B12 and not folate, and you've low folate, then the B12 doesn't work properly. Have you had your folate levels checked? Mine was 5 ng/mL [4 - 20] when apparently it needs to be more around 15.

Of course don't take my word for it, do your own research ;)

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Hi Steve take it the doctor visit didn't go so good if you're planning to self inject . I want to see how I go after next jab first before I think about it myself. I've been doing so well until now still have everything crossed that it will all come good . Sorry for ignorance but thought that was what took 5mg of folic acid for but is that another f . Like to get my f. . ng head back ! 😄

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Hiya,

I wouldn't say it went /bad/ and I'm sure they'll keep me alive, but I want to live, not just survive. I'm showing all the signs of subacute combined degeneration with the wobbly walks and the changing brain states and according to medlineplus.gov/ency/articl... "If treatment is delayed for longer than 1 or 2 months, full recovery may not be possible."

At the moment all I have is 5 more injections booked in after I managed to get a second loading dose and a letter being written to a haematologist who should've been supervising treatment from the start, and a change from 3 monthly injections to monthly "so no-one can say we didn't do anything".

Compared with the official guidelines which say "inject every other day until no further signs of improvement" and that's just not good enough. I shouldn't be suffering like this now and every day I don't get injected is another day closer to issues being irreversible, so that's why I'm ordering B12 and all the stuff I need to inject, because I kinda wanna live.

As for the f, yes, if you're getting folic acid or your levels are ok for then it works as a cofactor, otherwise it seems the B12 doesn't do the thing alone. But again I'm only a week into this, people have been studying this stuff for years and there's people selling stuff left right and centre so you have to take lots of aspects into consideration, but the biggest for me is I've lived my life, I've seen my mother battle through the medical system with her issues and I've battled through life with my various issues to do with food and mental states.

Main job is right now to ensure I don't have permanent nerve damage, and if that takes jabbing a needle into me then it's the least I can do to take responsibility for my own health and wellbeing IMHO!

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I think in your position I would s.i . At the moment it hasn't stopped me doing anything. It has just been a struggle sometimes but I did go ape thinking I was suffering from anxiety. I know you're feeling off balance but if you try a cycle even a very short one just to get some air it really helped me to be out as I spent every moment at the beginning really concentrating on everything my body was doing and I realised that when I was walking, shopping etc. I would completely forget how rubbish I was feeling and even enjoy myself sometimes!

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That would be great if I didn't wobble when I walk, walk into things, get paranoid every 5 minutes and so on. I've hardly the energy to get out of the house, and I'm in no fit state to cycle anywhere.

My trouble is the large blood cells I was diagnosed with 2 years ago should've been picked up as B12, I'd already been ill for some time by then just didn't know.

I'm used to being stuck in the house, I know the B12 injections work, at the moment I'm conserving as much energy as I can as I still have my business to run, probably 4 days at a conference in London and getting the flu after that didn't help but getting lots of connections and conversations I'm building there, plus working out what flippin needle types I need for my fat bod ;)

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I think that fatter the bod the bigger the needles! No just kidding 🤡

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Weight's been a problem as far back as I can remember and it was only when I gave up carbs and dairy & went gf 10 years ago I lost lots, I didn't realise I had an actual medical issue with those foods though, realising now looking back that it was giving up those foods that gave me the energy to do the exercise which went along with the diet to lose the weight! I was 19 stone when I was 19... 17.5 stone when I gave up the carbs, went down to 12.5, now back up to 17.5

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Hopefully you'll get back in shape once injections kick in and have energy again. What is going on with this it is becoming tiny.

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Yeah, it's like the comments box is going "haven't you managed to make your point yet, use smaller words!".

Hopefully it'll kick back in shape yes, having had "brain bruising" from a car accident when I was 13 and doing voluntary work with severely mentally handicapped kids, and having been beaten up for a year by a bipolar+bpd ex fiance I'd prefer not to be stuck in my own scary mind permanently thank you very much, and I rather like walking and cycling and stuff.

Discovered "subacute" means fixable but it's gradually getting worse every day and tuesday seems a long way off right now.

Just managed to complete my order of the minimum amount of kit I need to SI so happy about that. I doubt it will all arrive before Tuesday but at least I've got it for when this next set of 5 shots from the doc runs out.

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I really hope it all works out and you can live again. Hopefully after next loading you won't even need to si. Are you on 3 monthly after that .

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I'd love to have the same thoughts but knowing my history I reckon I will. I will anyway, there's no overdosing on the stuff.

They put me on to monthly but I'd much rather learn to do it myself and not have to deal with the NHS, it will save them money and time anyway, and it's super-cheap doing it yourself so they can use that time and money for others.

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