New Poll - ? How often do you feel you need your B12 injection

[Treesong2023]

Hello lovely folks

I saw there as a poll on the above 10 years ago.

I wonder if its a Poll we could do again?...as shared knowledge and experience is now 10 years wiser...? and many have questioned B12 Guidance from medical bodies.

Could it generate some useful learnings..? if we are trying to attract the interest and trying to influence the medical profession, then...all, and any data we have to share can help us all..?

If it does make sense? and isnt to had to set up? Can I respectfully request a new Poll..?

I will do it myself if there are so instructions to follow?

Many Thanks !

Treesong

[Sailinglady]

I agree, another survey would be useful

[RoMello]

I think the PA Soc commissioned some research that reported recently/last year (search their news letter?) surveying PA and B12 Def sufferers, which included treatment and diagnosis or lack of, and if I recall correctly frequency of injections including SI and other experiences with engaging with medics.

It might have been the background to helping set priorities for research in future. Sorry too tired to look it up and patchy memory (noone here will be surprised 🙄).

I know when I read the survey findings it reflected a lot of my own experience and frustrations. And importantly I really felt heard and understood, so thank you PAS!

It's great that I notice you are curious and asking lots of questions here. That's really the only way to empower yourself with information and potential choices to help yourself. I have been so grateful for this forum over the years, I hope you find what you need.

[Treesong2023 in reply to RoMello]

RoMello, Hello - and thanks ever so much for the information..I will scout around and tag it back when i find it. I am very PA/ B12 Curious ! Yes, indeedy. I am very interested to hear about the total B12 load people took on at the point of initial " load up" to dosage and frequency of their everyday dosages after that.

Some people have reported having "loading up" doses EOD or ED for 5/6 months. So, they got 90+ml or 180ml load up's. I know it varies to the type symptoms/damage involved.

But I am keen on this as I feel there is a level of B12 resupply for functioning and re-stocking in the liver we all needed.. But also another amount needed/used to repair the body as well.

Again, i thank you for your kind help.

[B12life]

I missed this poll, so better late than never.

Every day if not multiple times a day.

I suffered since 2012 but finally diagnosed in 2020 with serum b12 of 190. I was bed ridden, heart palpitations, muscle loss, swollen tongue, loss of appetite, severe back pain, sciatica.

Im now able to live normally for the most part and exercise as long as I inject daily. Any time over the years I skip, I get depleted and it takes a month to recover.

everyone is different, but this has been my experience.

it will depend on cause... if it's diet related that's a whole different thing. Oral supplements should help in that case after getting b12 levels up and injections not needed. For me, it's not diet related. I simply do not absorb b12. I was taking 50 times the daily recommended for 2 years only still to be depleted.

I recommend that daily injections are done until symptoms resolve entirely, and then try and space them out. If it's diet related, then switch to oral and see what happens.

[RoMello]

I forgot to mention, I never got loading doses when I was first diagnosed 20 years ago. I got injected at the GP surgery 3 months increasing to 2 months after a fight, and always felt just about functional for 2 weeks post injection. I gradually felt worse and worse with no life.

Started getting fibromyalgia and balance issues despite injections, and finally decided to SI about 5 years ago. Result 2 doses a week! Keeps me on a more functional level, though still have to rest and pace myself carefully to doing anything demanding/tiring.

Gradual improvement in mood, fibromyalgia and energy levels, and stopped getting jumpy eyes when I got up in the morning. A lot of neurological stuff.

Told pharmacy during COVID when everyone was switched to oral b12 that it didn't work for me. So now on record officially as SI. Not seen GP about that since.