Hi, I've been (blood) tested for F1 antibodies and the results were negative, but I've heard the test is notoriously unreliable - does anyone know of a better test that I could request or is the standard blood test the only one out there?
I'm going to ask for a parietal cell antibody test, and possibly thyroid tests, and I wanted to get the F1 antibody test redone, all at the same time, so if there is a better way of testing I'd love to know about it. Anybody?
No no other antibody test for IF available.
Huh, that's good news... not. Well, I'll just have to have it retested and see if it throws up any different results. Thanks anyway, Marre.
Why would you? It would only show up positive if you have autoimmune PA, about 60% with PA have a positive result, but there are so many other reasons to have a problem absorbing, and or transporting etc B12. No one ion my family test positive for IF antibodies, all are on B12 treatment for life..
I am trying to get something concrete to go on. Until I can 'prove' I have B12 deficiency I feel I am on borrowed time with my doctor. Given that I have TN I am not considered a typical sufferer. TN has been written off as being caused by 'a vein pressing on the nerve and wearing the sheath away'. The trouble with that diagnosis is it is a well-known fact (by neurologists, not side-lined 'crackpots') that many people are walking around with nerves being compressed and they never develop TN. In fact, I wouldn't be surprised if everybody, somewhere in their body, has a nerve being compressed by a vein but they don't get any symptoms, now or later.
I believe that there is a reason for the sheath wearing away, just like there is a reason in MS and all the B12 deficiency 'diseases'. But no neurologist or researcher is concerned with the why of TN because it's in your head, literally, and no-one researches such an uncommon and difficult to treat disease. They just throw drugs at it and these drugs are a nightmare. I am no longer functioning like a human being. To give one tiny example, I had to get up early (9 am) to go for my B12 injection on Friday, subsequently the whole of Saturday disappeared for me. When my partner pointed out it was Sunday today, not Saturday, I could have wept. I literally lost a day. This is because the anti-convulsants I take can't cope with morning rising. Every time I have to make a medical appointment (and right now there seems to be a million of them) I have to argue over not getting morning appointments and I have to explain, which is humiliating and tiring. You just know they don't really get it and they think you are making a fuss over nothing. But it's very, very real.
I'm in a horrible position of being in such acute pain I can't eat, talk, shower, brush my teeth, drink or go out, OR I live in a drug-induced coma of exhaustion and befuddlement, but with manageable pain. And we won't even talk about the depression. It's not a life.
I really, really want something concrete, and I know I'm asking for something well-nigh impossible. If I could only know that I had PA or B12 deficiency of some sort for sure. When I first talked to my doc about it being B12 deficiency one of the first things he said was "Well, you don't have anaemia", but you've just said only 60% of people show F1 antibodies, so does this mean I COULD have it? I really don't know.
I'm living in a state of terror at the moment because this is my last week of shot-loading and I have NO idea what to ask for. None. I'm terrified that we're stopping too soon and that my body needs more B12 than once every two months, but I can't tell. I literally can't. The drugs makes me dizzy, exhausted, stupid, given that, how in hell can I say 'Yes, they make me better'? I'm too bloody sick with medication to know the difference.
I am really sorry to bang on at you, poor thing. You chip in and get this - I apologise, but I am at my wits end here. Damned if I do and damned if I don't. THIS is why I want to have a positive F1 test, a definitive something I can hang onto. Something I can say 'Look, I have this, I need to treat it to help the more obvious problem' and it just isn't there.
I am sorry to read you are putting all your hopes on a positive IF antibody test, its just very unlikely..You are on B12 treatment because of the TN, not because of an obvious deficiency, you are not now going to be able to have any other tests for possible functional B12 def as you have now started treatment. But your GP seems willing and kind, its very hard for you both if you can not say I think its helping me, perhaps you can ask for a longer try. I wish I had a magic wand that would mean it would show every one what it is you need to be with out pain, it must be horrendous to always live with pain. You have my sympathy, and I wish for you that the B12 does you good and that it will show soon! Marre.
Thanks, Marre, I appreciate that. My apologies again for dumping my anxieties on you; it was kind of you to listen.
Best time for a blood test?
Anyone test positive for IF antibodies and still have GP who is reluctant on treatment?
Should I push for a test?
What's a FULL blood test in UK ?
