Hi All.
A quick recap on where I was when I first joined...severely ill with gastric problems, 2 stone weight loss, unable to eat at all for 4 weeks, symptoms of B12 deficiency returning with a vengeance (including neuro symptoms), asked for more frequent B12 injections (which I should have been on in the first place), but very hostile GP stopped all injections due to B12 toxicity (don't worry, I now know this was a nonsense) 😀.
So..I arrived here...started reading and learning...and pushing GP's / consultants to do what should have been done...oh, many years ago...
And here's where I'm at now...staring with B12 ('cause many asked for updates about the possibility that B12 had stopped working)...
After multiple quite hostile appointments and much evidence waving with GP, I'm now on an eight weekly regime of injections - which I supplement with self-injections (currently every other day but will stretch out when other treatment kicks-in). MMA and homocysteine normal so not thought to be any element of functional B12 deficiency.
I've been doing all the 'ologies' and am just coming out the other end (feel a bit like I've been minced through a sausage machine 😖).
With the exception of the gastroenterologist who only looked for bleeding issues, couldn't account for the B12 deficency, low ferritin, low vitamin D (and had never heard of anti-body negative PA), the others have been excellent (though it's been very slow waiting for appointments, tests and follow-ups 😖). No,surprises there, I think.
So...ferritin / vitamin D rising nicely (on supplements), heliobactor finally eradicated, no large fibre neuropathy, demyelination, or sub-acute degeneration of the spinal cord. Hurrah 😀.
Diagnostic Bus: duodenitis, gastritis, multiple duodenal ulcers, achlorhydria, gastric paresis, intercostal neuralgia, disc herniations at cerviacl 4 - 6, frozen right shoulder....and...the autoimmune condition that underpins it all...undifferentiated connection tissue disease (UCTD)...I may or may not have markers for other autoimmune conditions (i.e. Lupus, sjogren's etc)...so more testing and scanning going on. Think the strongly positive ANA (1:1600 homogenous patterned) gave the game away.
Apparently, 20% of people with this condition go into remission or have good symptom control and 80% go on to have markers for other autoimmune conditions...so waiting to see where this goes.
But here's the best bit..they started me on treatment immediately (no endless waiting for more results and follow ups 😀). So I have a titrate dose of steroids for three weeks and have also started on immunosuppressants (which will probably take up to twelve weeks to kick-in).
The prospect of beginning to feel well is a strange and wonderous thing 😀😀. And even better, they're going to continue to treat me.
At the moment I'm not so good...still in dozy, foggy, sleepy hurting mode (a flare, I'm told)...but hopefully not for much longer. Taking sauerkraut and lime juice for gastric relief (may try symprove - perhaps I'll get some for Christmas 😄). Still have multiple symptoms but I'm pretty sure that these have their roots in the autoimmune 'thingy', rather than being a B12 issue (time and treatment will better enable me to sort out what's due to what).
So I really want to say a big thank you to all here: for the information, knowledge, advice and support...and the laughs too...well...for everything.
Pay back...not sure how possible that is, but I'll certainly try (and be trying, too) 👍
I arrived as a wreck...and I'm still a wreck! But hopefully not for much longer 😀.
So thank you, my lovely wonderful stranger friends 😀😀
Just diagnosed
Update and a giant thank you 
Had antibodies, now don’t
