Hi again! I posted on here when I got diagnosed with PA in August, and have found a very supportive community- thanks to all users, as every bit of another person's experience is useful to someone.
Update - I have now experienced the predictable disappointment of visiting the undereducated GP. Having researched my symptoms here and elsewhere, I went to see my GP yesterday to ask for more b12 injections (finished loading doses 5weeks ago) as I also have neurological symptoms (burning feet, pins n needles in arms and hands at night particularly, and new problem of pain in right hand and not being able to write neatly any more). She was not the GP who diagnosed me (b12 was 104) but is a partner in the practice so can sanction more frequent b12 doses. Apparently not - after telling me that 'we don't want to poison you with too much b12' (I corrected her nil knowledge of said vitamin) , she said that she'd have to email the neurologist as she can't make that decision to give me more, he has to. She assured me he'd reply quickly. He did. Today I got voicemail from her saying neurologist says I can't have extra b12, to wait 6-8 weeks as symptoms take time to improve. So, she and he have fobbed me off, and there was I thinking if I did my homework and quoted bnf and BCHS guidelines at her that my GP would at least help me, if not thank me for educating her. She refuted what I said were bnf guidelines, and never once said she'd look into it all. Like so many on this forum I am left exhausted by the amount of doctor's work I have had to do for myself, and am now preparing, in between working and resting, to draw up battle lines.
Sorry for the whinge, but I guess I just wanted to add my voice of disappointment and disgust at the medical profession's lack of education( which all us patients seem capable of acquiring) to this long-suffering group of lovely people!