Almost there...

[Schenks]

Went to the Neurorolgicoll Rehabiltuyation consultant (need the f****g B12, already!), had the discussion - on 21st of July. Booked appointment in advance with GP (Iron knichers) for 15th August to give her time to get letter, panic, and organise jabs. Went to GP on 15th - no letter therefore won't refer me to treatment room for jab; calmed down her hystericas after reqwuesting sub cut rather than IM; she gave ne telephone numer for treatment room for me to phone after she's referred me - after she's got the lerttter (told you need the B12! Not going to edit this just to show how boggled i am). She gave me treatment room numer syaing it was different to surgery's.

Told her he (neirological rehabuioyltation consu;ltant) agreed to 1 per month trial for 3-3 months but thinking o self injecting - startled as GP had palpitations, tapping her chest, wild-eyed and almost screaming "you can't its damgerouis, build up too high ...; (pins and neeldes in my left 3,4,5th fingers as typing - need B12...)

Left it a while so that she could tell treatment room to give me s*dding B12, rang thamn on 19th; no message from Iron knickers. Rang surgery (different number, but discovered i could choose their exctension) to see whan letter arrived - no letter; hang on, says receptionsit, let me look at todfay's ... aha! it has just arrived - last letter in poile f todays post! Hmm.

Rang cosbutlant's secreatarty - she sent it off, already! Asked for copy - emauilsed. Turns out he dicatated it to his secretatryt on the 27th July; she typed it on 4th August; my surgery received it on 19th August; GP not in - can't make appointment for 1st B12 till iron knickers - is back. When? No idea.

Do you think i need B12, and fast?

Sigh.

[Schenks]

Hi and thanks for your reply. No, not got the B12 stuff yet but I need to wait until I have the 1st jab at the gp before self injecting anyway. So that's an idea - will ring the surgery on Monday and if Iron Knickers is not there to expedite it, I'm going to try your suggestion. Thank you.

[scorpiojo in reply to Schenks]

You should wait until a GP or consultant organises injections after a blood test... You can get a private test, and see what the GP will do... You wait to see if you feel any improvement and can print off guidelines of adequate treatment and hope you get enough... If you feel improvement but fall short of GP injections that the time to again put up blood results, and others will SUGGEST a path you may want to explore with another medical person or try at your own risk self injecting.. B12 can't be over given, but you are a long way off from doing this... You have to go to the GP or get blood work 1st... Anonymous 888 😊

[Schenks in reply to scorpiojo]

Hi and thanks for your response. The injections have been ordered by a consultant, as well as Dr C from a B12 website diagnosing an urgent need for B12.

As I understand it, blood tests are somewhat pointless after taking B12 anyway and after the 1st injection, to learn from my symptoms as to when I would need to repeat the injections.

What is anonymous 888?

[wedgewood]

So do the contraindications you have mentioned apply to ALL injectable B12 whether Hydroxo, Methyl or Cyno?

[PAS-admin Partner]

The information that was posted on these injections is not correct.

I have read the leaflet in German (not just this brand, all of them) , and there is no mention at all of all these things and contra-indications!

There is only ONE contra-indication and that is an allergy to B12 itself.

B12 does not lower potassium, unless you have (severe) anaemia, and in the first week of treatment. There is a lot of scientif information about this, I'll go into that somewhere else later.

For people who read German, this is the official one: de.oddb.org/de/drugs/fachin...

Feel free to ask me to translate something if you can only find official info in German.

[deniseinmilden in reply to PAS-admin]

Thank goodness you have intervened. There suddenly seem to be a lot of "experts" with strong opinions and a lack of factual knowledge posting replies on here. Thank you for organising the administration of this site.

[Frodo in reply to PAS-admin]

I've tried to check this out and found the following (see link below). I'm not a scientist or medic so it isn't easy to follow, but as I understand it, it is saying there is a link between LOW B12 and thromboembolism.

Quote: "The results indicated that vitamin B12 deficiency was common among patients with hyperhomocysteinemia and thrombosis."

I'm not sure what the implications are.

ncbi.nlm.nih.gov/pubmed/214...

[PAS-admin Partner in reply to Frodo]

There is a link via hyperhomocysteinemia (and if because of B12def then via via) to thrombosis yes. That is something completely different than injections giving a higher risk for thrombosis.

[Schenks in reply to Frodo]

Just read it. The implications are that there is a link between low serum B12, whatever the cause, to thromboembolism. Thanks for the link.

[Schenks in reply to PAS-admin]

Gosh, now i am confused! Just about to read the German leaflet ...

[Schenks in reply to PAS-admin]

Yep - i read it! Not so worried now. thank you.

[PAS-admin Partner in reply to Schenks]

No problem. This is 'just' a forum. If you have any concerns about anything health related of course always consult a doctor.

[scorpiojo in reply to PAS-admin]

Well done 😊

[Withattitude]

How about a changing GP? I'd there a better one at the practice?

[Schenks in reply to Withattitude]

Great idea - but I think i'm going to top it. I'm going to change practices! Thanks for the advice, though - I'll try your tack first!

[Withattitude in reply to Schenks]

Great! Hope you find a good one

[Hidden]

All joking apart, Iron Knickers, needs a shake. Poor you.

I can imagine you are silently screaming to everyone, 'GIVE ME THE B12 IT IS NOT A CLASS A DRUG.' You would probably receive the class A drug quicker. Joking Joking.

I have been as desperate for b12. I became so low in my dose levels it took months to climb up my levels, in the early days.

[Schenks in reply to Hidden]

Silently? Thanks for the reply, Vala. How often did you inject to get to feel better (do you inject?), if you don't mind my asking?

[Hidden in reply to Schenks]

I have had PA for 20yrs. During that time I was working full time in a very stressful job. During those 20yrs I was being injected every four weeks by practise nurse at doctors. When I retired 2 yrs ago my stress levels dropped dramatically. As did my NEED for Vit B12 medication. I am tested regularly by blood sample, every year, or when my doctor & I agree my symptoms are bad.

When my B12 symptoms return I top up with oral b12 from Holland & barrett, for a couple of days, usually my symptoms subside inside of the 10 week frame. But, do not subside when I am near an injection of between 10 &14days.

My symptoms are: dropping items, judgement of distances not accrate, brain fog. Loss of appetite, feeling of vunerability, need to protect my family from whoever. Sensitivity, to others, jokes, phrases, used regularly between us. Need the loo often.

Pale complection, painful bones. Unsteady on feet. No energy. Sleepy.

I hope I have been helpful.

Silently, was my dry sense of humour, I really feel for you.

No, I do not mind you asking. Since joining this website, I no longer feel as if, I am neither;

I am the only one suffering, and also my husband & I supported.

Saying that though my doctor and G P practise are brilliant. I have had a few battles with locum nurses.

By for now.

[Schenks in reply to Hidden]

Thank you for your reply. I got the dry sense of humour - was being ironic back! Sounds like you've got your b12 down to a fine art...gives hope. x

[Hidden in reply to Schenks]

It has taken long enough, lots of tears, frustration, patients, manners, polite. Fighting battles, nicely, with a smile.

I sound awful. Worked. Need be. BFN.

[Schenks]

Thank you very much for the warnings - i am certainly taking them very seriously. I had planned to take the first injection at the treatment room in any case since there is a slight risk of an adverse reaction, but I haven't seen any of the warnings you have kindly flagged and i will be researching how to counteract any problems.

[PAS-admin Partner in reply to Schenks]

Please just read the official leaflets and official information from health and government databases, not 'stuff from the internet' . Of course one should always take care, we absolutely do not recommend self injection without a health professional's supervision, as stated before.

[Schenks in reply to PAS-admin]

It is as a result of the information and advice on PAS that I am waiting for the first injection to be done at the surgery, in order to make sure I am in a safe place just in case of any bad reaction. Sound advice.