Help ! Does anyone know where I can get my partner GP or safe private health care Vb12 dots in manchester ?
My partner is really suffering diagnosed 2 years ago he now has drop foot too 12 week injectionwith nhs is just not enough and not getting any support or help or understanding from nhs practice 🙏🏽
B 12 shots injections I mean ! 🙄
Sorry to hear this - not following their own guidelines for treatment of B12 deficiency with neurological issues seems to be their default. I've just written to PALS to start a formal complaint about my non-treatment, I think we all need to start doing similar.
My personal advice as a non-medical person who is just trying to help myself get better is you need to have at least alternate day injections as the guidelines say in order for improvement over time. I am a year and 545 injections in and I still inject twice a day. The trick is to inject before symptoms reappear or as you feel them reappearing.
This would make private injections cost prohibitive and unpractical which is why so many of us import from germany in boxes of 100. I also bought an auto-injector as that takes away a lot of the mental issues of jabbing yourself, although obviously if you have someone around they can do it for you if you prefer.
So I thought I'd post before you pay lots of money for not much improvement - 100 injections with all the syringes and needles and stuff works out about £100-120 - private jabs you'll only get about 3 for that, if that.
Wow THANKYOU sooooo much this will really help my partner to ready he’s very down about it and it’s so distressing we are not getting any help ! Will look into getting supply from Germany do you have the suppliers details 🙏🏽
Hi,
If your partner has a PA diagnosis or suspects PA is a possibility, may be worth joining and talking to PAS (Pernicious Anaemia Society). They can offer support and info about PA. Sometimes they can intervene on behalf of PAS members.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
B12 Deficiency Info website
Some UK forum members have had help from B12d.org
What NHS treatment is he getting?
UK B12 documents
If you're in UK, I suggest reading all of these.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
BMJ B12 article
BNF
bnf.nice.org.uk/drug/hydrox...
NICE CKS
cks.nice.org.uk/anaemia-b12...
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Lots of useful info in link above.
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
"not getting any support or help or understanding from nhs practice"
Help for GPs
1) PAS website has section for health professionals.
pernicious-anaemia-society....
2) PAS library has leaflet "An Update for Medical Professionals: Diagnosis and Treatment " . Some forum members have passed this on to their GPs.
3) I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency".
pernicious-anaemia-society.... See Page 1 of articles.
I am not medically trained.
I'm so sorry to hear about your partner. I was diagnosed with Pernicious anemia in 2017 and had the program of injections but two weeks after my last weekly injection my symptoms returned. I was thinking about self injecting but (after helpful advice from this site) decided to first try a B12 supplement. I had tried one before that didn't work at all; I looked for one that has very good reviews. I use Jarrow combined 1000mg B12 and 400mg folate tablets which I order on Amazon. I take one every morning and allow it to dissolve under my tongue. My symptoms have receded and I am relieved that I don't have to self inject for the rest of my life. Good luck!
Www.ivclinic.co.uk has a clinic in Manchester giving b12 injections by a private GP.
Blue horizon or b 12 Horisen someone wrong name this is correct etc name.tel number is02071250523.They very professional and one of their nurses make appointment and will do it.
Very sorry I am posting but my iPad is dictating what I type hence I read what I posted and it looks like monkey with no brains or hands has posted
Bittersweet Bonds - Pernicious Anemia and the Doctor-Patient Dance
seeing neurologist, advice on b12 injections welcomed…
Has anyone had insomnia from B12 injections?
