First SI blimey

[ozwald28]

Hey guys its been a while.

I have been on a trial of 1 injection per month for 3 months to see if my neurological symptoms improve under guidance from haematologist. Well they haven't gone away and i still have pins and needles periodically. I mean its obviously no surprise that a mere 3 injections spaced 1 month apart hasn't done much when NICE guidelines recommend every other day until no further improvements. When i read out the guidelines the GP basically laughed at me.

Anyway, like most others, i've been backed into the corner of self injecting. I got my B12 from germany, i got the 2ml hevert ampules. I just spent about an hour psyching myself up reading everything available watched about 10 youtube tutorials and all the guidance on here too. Still spinning out that i did it wrong but im sure its fine. Im going to barcelona on wednesday and need energy to walk around !

I still can't quite believe how unwell i've been this year and now looking back, how much better i do feel. In August at the peak i felt like i was going to die without exaggeration. I felt so weak, unbalanced, every fibre in my being was exhausted, i couldn't speak in a straight sentence, i couldnt catch my breath, i honestly cannot believe how bad i felt. Now i do still have issues but i have had around 10 injections since august and thats not a lot but i do feel like WAY more of human being.

What do you guys recommend is good time frame to SI? i was considering 1 a week for about 2 months and see how i go?

Happy new year too

[Lowblow]

hey sorry to hear you’ve been so unwell.. I know the feeling . Not being able to string a sentence together was the final straw for me.. I found an amazing doctor who was happy to teach me to self inject .. I’ve been doing so every other day since beginning of December.. Have started to get reversing out symptoms after a few injections in the fact that my feet feel alive with electric shocks and pain.. was told to expect this as nerves start getting b12 and waking up !! Can’t say I feel better but feel like it’s doing something and after being deficient for so long that’s all I can expect .. it’s taken a long time to get to this stage so I guess it’ll take a lot to get out of it .. my advice would be every other day.. as stated by NICE guidelines… I was only getting one injection every 8 weeks on nhs …good luck with whatever you decide to do!! But bear in mind your likely to feel worse before you feel better.. think that’s just the way it is

[ozwald28 in reply to Lowblow]

Heya, glad you have a good dr now who has supported SI - you must not be in the UK? Luckily for me I have already felt worse before better unless ill feel worse again ahah. I'm worried about every other day as its 2ml altho the same dose It just feels like a lot l!

[Pickle500 in reply to ozwald28]

Hey there, yeah 2ml is alot for EOD treatment. Better to use 2ml for once a week ideally, and get your hands on 1mg/1ml instead. EOD is more effective at getting your levels up. And 2ml is for the more causal injector I would say.

Just if it helps you suceed with this!

[ozwald28 in reply to Pickle500]

Hiya what is EOD? It was hard and expensive to get these ones haha I doubt I'll find 1ml ones now - I am happy to do 2ml 1 a week it'll be 4 times more than im getting now! Just trying to understand how 2ml isn't very good for getting levels up and is more 'casual' can ya explain that please? Thanksss

[Technoid in reply to ozwald28]

EOD : Every Other Day (injection)

[Pickle500 in reply to ozwald28]

Injecting in a short space of time, like Every Other Day or daily (not recommended unless you have a strict routine of moving around different body parts and sites) gets your levels up high and fast. Then, people often space out injections to keep levels high and let healing commence, which it can only really do when levels are kept consistently high.

A 2ml solution is alot of liquid, and so injecting it into sites every day or other day risks overloading the sites with too much liquid. Ideally, you want a lower amount of liquid so your body can absorb it quickly and easily.

In effect, it's all the same amount of B12 going in (1,000 hydroxocobalamin) but 2ml is limiting the injection to just the thighs, since the arm (deltoids) can't really handle that much liquid.

So - if you're asking your thighs to take 2ml of liquid, each one once every two weeks (because you should alternate) that is a very low risk strategy for your thighs and body. And of course you can't overdose on B12. But you can increase the risk of hurting your body if the injections have too much liquid. A low risk, but a risk worth eliminating I would say.

So it sounds like once a week, each thigh, with 2ml liquid containing 1mg B12 is the Doctor's order! Hope it goes well.

[ozwald28 in reply to Pickle500]

Thanks for explaining that makes a lot of sense! Yes I'm not keen on doing it EOD but 1 or 2 a week alternating legs I reckon? It's such a wild idea that the drs won't give us enough to recover that we are forced into this situation

[Pickle500 in reply to ozwald28]

Yeah it's mad isn't it. Shocking really that GP's say 'they don't know much about B12' when it's clearly a huge reason for illness. I've come to realise that, when you find a good source of information, the internet is a far more trustworthy place.

So, hope you trust me! And Hervert is a good brand, no worries there. If you do choose to do 2 a week, just make sure you space out the days with at least 3 days between them (if it's the same leg).

Either way, the body loves consistency. So I would test things out a bit. Try one injection in one leg and then give it a week to heal. The body will thank you for getting time to heal itself and understand what you're doing to it!

Good luck

[ozwald28 in reply to Pickle500]

Very good advice - the injection site has gone all red and I'm worried about it 😕

[Pickle500 in reply to ozwald28]

That may be your leg getting used to it. You probably haven't injected there before right? The muscles need a minute to understand what you're asking them to do. So leave it a while and see how it improves in a day or two.

You may want to try the other leg next week and see how that goes. Don't continue with anything if you're uncomfortable.

[ozwald28 in reply to Pickle500]

Thanks I hope I haven't messed it up but I'm sure if anything super bad was gonna happen it would have when I did it?

[Pickle500 in reply to ozwald28]

It should be totally fine! The key is not to overdo it - let the muscle soak up the B12 and repair itself from the injection. Should be nothing to worry about.

Well done!

[ozwald28 in reply to Pickle500]

Thanks for reassuring me ! You've been so helpful

[ozwald28 in reply to Pickle500]

Its 1000 hydroxocalobamin

[ClareP5]

I rely on Dr Chandy's work and so went every other day until the symptoms were all gone. Once I felt better I tried every 3 days but I quickly went back into deficiency, so 2 + years on I'm still injecting Every Other Day (EOD). I don't enjoy it, but I feel really well, so I'm over it!

[Treesong2023]

I have absolutely no idea about "SI". But wanted to say I really feel for you, and the poor state of health you had to take on and try and deal with.

I also wanted to say well done.

For being so plucky, and working to gain an improvement in your health. I am quite sure the good people in here will offer the advice you need.

Wishing you well. 😁🌻

K.

[ozwald28 in reply to Treesong2023]

Awe thanks so much ! It's been hard!

[Midnight_Voice]

SI = Self Injecting. Ordinary people forced to act like junkies because the medical profession has failed them so utterly

[ozwald28 in reply to Midnight_Voice]

i mean - lots of people with health conditions have to self inject so i would go so far as the junkie comment, but agree its because we have been massively failed!

[Wwwdot]

Sounds like you’ve had a tough time but you are tough too. You have a positive self help mindset - sometimes we have to rely on ourselves and this is one of those times. I arrived at the same point as you too and this is what I do to survive and stay alive. I self inject every other day into my tummy fat (it’s called subcutaneous rather than intramuscular) effect us te same but less painful. I inject either 1000mg or 1500mg Hydroxocobalamin (purchased from Germany at around £1 per ampule) in 1ml depending on what’s available. I will try to increase the interval between 1500mg jabs. As you cannot overdose be guided by symptom management- keep a journal. The main concern is care of the injection sites as stated by others.

Try to find a PA specialist and have a consultation- I did and I have been prescribed vitamin patches and high dose folic acid to assist my recovery. Every body is different and you need to ensure B12 healing is not hundred by other deficiencies. I will have another consultation with the specialist in 3 months.

How do I afford a specialist? I have a tin called “alternative treat tin” whenever I resist buying chocolate or a coffee I put the moment in the tin - it soon mounts up! My ultimate treat will be seeing the Pa consultant again.

Best of I I and enjoy your trip!

[ozwald28 in reply to Wwwdot]

thank you ! and yes its very difficult isnt it with PA being so under-recognised by medical professionals. Its a good idea to get a specialist in the field but im afraid it would cost me so much - are you in the UK? How do i find such a specialist? Glad youve been able to take things into your own hands and its gone in your favour !

[SunnyWorld]

Nice to know the doctor found NICE guidelines so funny! What an idiot!! Good on you for taking it into your own hands it seems to be the only way for some.

[ozwald28 in reply to SunnyWorld]

I know it's bad isn't it - she also tried to make out that my symptoms were related to my mental health- classic - didn't know mental illness could cause peripheral neuropathy 🤣

[SunnyWorld in reply to ozwald28]

Omg!! Typical. That's why we take it upon ourselves to self inject! They don't listen or take it seriously!

[Emmers5]

take heart! This is a forum with wonderful supportive knowledgeable folks who truly saved my health! I was failed by my doctor and am now 5 years since diagnosis. After being under treated for a few years I now self inject every 5 days. I had more symptoms than I can list here (even loss of speech and proper swallowing) and they have all resolved and a month ago I another symptom that I hadn’t realized I had disappeared. Life can be wonderful again.

[ozwald28 in reply to Emmers5]

Yes the people in this group have all been incredible in such a hard and lonely battle so grateful to have found this community- I don't have a diagnosis of PA but highly suspected and we all know how hard it is to get a sold diagnosis ey - I cant believe how unwell you can get from it I had the swallowing thing aswell - glad you've been able to take this into your own hands

[Ritchie1268]

I did it every other day for many months, now I do once per week.Hope you feel well enough to enjoy your holiday.