Hi all, I have written before about having different results from two different hospitals on my AMA/AMA M2. The situation has developed into more bizarre situation. My AMA has been positive for 8 years that I know of. It started when I became quite ill and they did some blood tests and found that I was positive at 1:40. Over the years, this has gradually and steadily increased. Ive had severe pruritus, chronic fatigue et cetera for years but a year ago it became debilitating. I was being seen under rheumatology. I insisted they re-do the AMA test which they didn’t want to but I insisted & they agreed because they were “stuck” with my diagnosis thinking it was Sjögren’s but not typical. My AMA was 380 this time July 17.
Question one: when you have an AMA test, and it comes up positive, will your AMA M2 subtest be the same or lower or can it be much higher titre?
I was then referred To A hepatologist but that took ages on the waiting list so I went privately at the London Bridge Hospital. I Paid for full blood count plus an AMa 2 test. I was given the all clear. One month later I had my appointment at the Royal free & I was diagnosed as being “pre- PBC”. My M2 titre was 1:1200.
Question two: is it possible for AMA to go from gradually steadily increasing titre over many years to suddenly being negative?
Question three: is it possible to have a positive M2 at such a significant Titre and then suddenly be completely negative?
I challenged the London Bridge Hospital on their blood test. They agreed after many months to re-do the test which they finally did a week ago. Incidentally, the AMA M2 test was never done by them even though I paid for it. Their excuse was that the AMa was negative so there was no point in doing the M2.This time the AMA they say is positive but that the M2 was negative but they’re sending it to another one of their own in-house labs to doublecheck the blood. Personally I trust the Royal free.But I’m just wondering is it possible for M2 to fluctuate so drastically as to go one month from negative to the next month to 1200?
I know we are not doctors here but if anyone has any knowledge or experience in this situation please could you respond?
My scans were normal but the first fibroscan was 4.5 and within a month it was 5.5. Does this inIndicate anything? I’m now 8.5 months on & just wondering what my fibroscan would show now.
I’ve had abnormal LFTs album and AST et cetera in the past over one year in which I was perhaps enjoying myself way too much.
My diet has been Impeccable for the last couple years and has been extremely good most my life. I have stopped drinking completely because I now have corrosive oesophagitis and corrosive duoditus.
Question four: Are gastric issues related to PBC? I have major problems. And have been put on omeprazole which I understand is not good for the liver.
I have severe Sicca syndrome, Eyes stage four. They are so severe that they’ve inserted punctal plugs into the tear ducts to try to keep my eyes moist. So far all tests for Sjogren’s syndrome have been negative. My understanding is this is very closely related to PBC as well.
Question five: why would I have all of the symptoms when all my blood test are normal in regards to PBC except for my M2 which is high. I feel like I am in nowhere land. It’s so hard to explain to anyone. I do not have a clear diagnosis yet because my LFTs are fine. And I feel a bit of a fraud on the site, and intruder looking at things that may not even be relevant to me. They have ruled out any other condition that would be associated with the positive M2.
It’s terribly lonely. Nobody understands. It’s impossible for me to speak to anyone about it because people do not get it. A close friend has cancer and people get that. People can see it. People know about chemotherapy and the side-effects. People talk about it openly. people see me out looking normal dancing my socks off, cycling up pills et cetera and think I am perfectly fine. I’ve cycled my whole life and I’ll be dammed if I’m going to give it up. But I pay for it, but of course no one sees that. I just disappear When I’m too unwell. Sometimes I Consider just having a big blowout eating all the pizza I want,Drinking all the booze I want et cetera just to push the limits into getting a diagnosis. I know that sounds mad but it’s so frustrating being in nowhere land.
Kind regards, amy