Well, after being so lucky with my GP and practice nurses, my luck has run out. Today I went for my appointment with the consultant haematologist.
He started off by saying I probably didn't have PA. I asked what he thought a combination of - very low B12, anti-GPC antibodies and a diagnosis of autoimmune gastric atrophy from a gastroenterologist - meant! He conceded that I might have PA but would need a test for anti-IF antibodies. I asked what help that would be when it turned out to be negative (as it would do in 50% of those with PA). He changed the subject.
Then he said that my symptoms can't be due to B12 deficiency because of my frequent supplementation. When I asked why they improve with frequent B12 injections he said it was due to the placebo effect. I was ready to walk out., especially when he suggested it was normally women that came up with nonsense like mine.
He then tried to tell me that my symptoms of Sub-Acute Degeneration of the Cord (unsteady gait, lousy balance, brain fog, depression etc.) were all due to my peripheral neuropathy.
Then he tried to tell me that most of my symptoms could well be due to my Neuroendocrine Tumours (NETs) in my stomach. I explained that these were baby tumours, so small theat they show up on none of the various imaging techniques they've used and they're not secreting any of the normal hormones one would expect. Indeed, the only evidence for their existence is histological.
Only two good things came from the not-quite-wasted morning. Last time I had my MMA tested it was just 2 days after a jab. Today I had it repeated, along with homocysteine - after a 16 day break with no supplements at all.
I also got a referral to a neurologist. I hope they're not so closed-minded and arrogant (he kept telling me that he gives talks on B12 - no wonder there are so many ill-informed GPs about).
So, I've been a bit depressed this afternoon, but really nothing much has changed. I'll carry on self-injecting as often as I need it. It'll be interesting to see how frequently I can get a B12 (sorry, placebo) prescription from the GP. I currently have a 10 week (for 5 ampoules) repeat. I'm tempted to 'forget' to ask about it next time we meet, to see if he'll 'forget' to change it.
Sorry to hear that you had such a frustrating morning.
Have you thought about something like passing the consultants details along to the PAS with a suggestion that they try to wangle their way into one of his talks and find out what rubbish he is spreading so they can may be contact him and explain where he is wrong?
I've just remembered. One suggestion he did make was that my experiences could be explained if I'd developed antibodies to B12. Sounds familiar?
Good idea Gambit62
Clever, clever!