Hi all. I finally went to my doc and asked for an increase in home injections. After loading doses, I started with home injections once a week. Then went to 2 a week. I realized I would have a few days a where symptoms would come back usually by the end of second day. I asked for every other day. The doc started to list reasons I didn't need more. I interrupted her saying how important it is to me not to have any bad PA days in any given week, it's safe and that any extra passes out thru urine. She gave me the increase!!! I realize it's very difficult for those of us with PA to get a doc to understand and take this seriously. I believe the fact I lost my right leg to cancerous tumors and how important I maintain good balance as well as any improved phyical and mental health changed her mind. Anyway, I'm now every other day which I'm picking up the new script today. I think it's awful we have to fight so hard and kind of act as a medical attorney to be heard and understood. My initial b12 was 90, IF was thru the roof positive and megoblastic anemia. I'll keep ya posted how the new jab schedule goes.
Pa home injections: Hi all. I finally... - Pernicious Anaemi...
Thought you might be interested in joining PAS (Pernicious Anaemia Society).
Although based in Wales, UK they have some members in other countries.
PAS (Pernicious Anaemia Society)
PAS tel no +44 (0)1656 769717 answerphone
B12 Deficiency Info website (UK website)
B12 Awareness (USA website)
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 most 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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".