Hello All. I first logged on here two - three weeks ago after my GP diagnosed me with B12 toxicity and stopped my B12 treatment, after which I discovered that I had been diagnosed with PA four years ago, but not told. I was in a bit of a state!
Arriving here is one of the best things that could have happened to me. The amount of advice, support and information offered has been just astonishing so I thought I'd just let you all know how much difference you've made to me or, to put it another way, 'where I'm at' so far.
Firstly, I was told that there were no NHS gastroenterology appointments available: I had to go on a waiting list to be put on the waiting list! So... I booked a private appointment (which I hated having to do) and was there in three days! To cut a long story short, treatment offered for gastric parisis and intercostal neuralgia, aychlohadia identified. When we moved on to B12 deficiency, the opening sentence was 'well if we ignore the noise in the wind...' Bet you know where this is going! I asked about intensive B12 therapy, as per NICE guidelines, and was told 'that's only for people in wheelchairs. You walked in here unaided! Enough said about that! He did say he would write to my GP and ask for three monthly B12 to be re-started, despite 'supra normal' B12 levels. How kind.
Next: went along to see the practice nurse, armed with loads of highlighted information (gleaned from you lovely lot) and an email from the Head of Clinical Neurosciences at one of the top Uk universities stating that 'there is no such thing a B12 toxicity. The high levels are simply an indication of treatment'. That got her attention PDQ! Short version again - the idea of toxicity came from the patient information leaflet inside the box of hydroxycobalamin in the side effects section!!!
Now the goods news: an apology followed by listening (end of surgery, I talked for an hour, not sure what I said). Another apology and promise to speak to one of the more forward thinking GP's). He called me in the next day and is looking for an appropriate neurologist and gasteroenteroligist with a specific interest in B12 deficiency / PA (I'll hope for a little expertise, as well). On the issues of alternate day injections - not entirely adverse but wants to take advice to make sure he doesn't do me any damage (fair enough, but it's a shame he doesn't know)!
And then: the private gastroenterologist wrote to the surgery to say in his expert opinion, intensive B12 therapy will not help because the problem is long standing and is likely to be permenant. He might be right BUT I don't accept that, at least not yet! And I'm waiting to see what impact that little sentence will have on the GP's newfound desire to help!
So - after being here, this is what I think. I've probably been undertreated with B12 all along (enough to tick along but not enough to repair), may have a problem with methylation, I need to consider cofactors as well, self injecting is the way to go (can't do any harm).
This is what I hope - extra B12 and a careful balance of cofactors may just make a difference and allow me to recover at least a little health.
I know it might not be quick and I've got so much to learn...but I'm not done yet!
An apology: lots of question still to ask (there's one brewing at the moment) so please bear with me.
A thank you: to all of you here. I've come to think of you as my 'stranger friends' and I really don't know where I'd be if it weren't for your support (oh the positive power of a like!).
Finally, the best thing I can say is, let's have more 'noise in the wind'. MUCH MORE!
Oops, sorry. I've been very loooong...again!