looking for insight

I recently went to the doctor after feeling extreme fatigue for months and just over all not feeling well. Blood work all came back normal outside of an elevated AMA test. There's a lot of information out there and trying to short though it all and make sense of it all has me second guessing PBC. I am well aware that a positive AMA is not evidence enough to dx PBC but I do have the afternoon fatigue, itching, dry eye/mouth, and joint pain. Just wondering if anyone can give me some insight on this. I have asked if there are more AMA tests that he can run to specifically check M1-M9 and am waiting to hear back. Thanks!

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  • I wonder if a call to the PBC Foundation may give you some helpful direction or an email to them.

    There is an MRI scan that is not currently available in the UK but is in USA that can map the liver to aid diagnosis however in the UK I believe the definitive test for those who are a symptomatic is a biopsy. Not everyone with a PBC diagnosis has had a biopsy.

    If you are not a member PBC Foundation is free to join. The link is above or Google to find them.

    Just as an additional thought has your B12 been checked?

    Hope above is of some use.

    Best wishes

  • Hi,

    Really I'm just agreeing with butterflyEi. Yes, you are right about AMAs alone (nb degree of elevation is not supposed to matter) not being enough to diagnose PBC, but as you do seem to have some symptoms, I would have thought a biopsy would be the usual next step - even in the UK. As butterflyEi says, why not check in with the 'PBC Foundation' people and have a chat. Also, I'd thought that checking the AMA sub-type automatically happened when they test for AMAs, but if not, then it's worth checking, as they need to rule out all other autoimmune conditions: both those linked to the other types of AMA, and ones that have these symptoms. I was tested for everything imaginable by GP, from Lupus, RA and thyroid conditions to Lyme Disease, as not long before I'd been bitten by a tick while walking/climbing in Skye!!

    I hope you get some answers, take care.

  • Liver biopsy can confirm or rule out pbc diagnosis. I had mine last Christmas eve. Because the pbc presented very early the Doctors and Pathologist had disagreed about the dx. However the bx did confirm and it was not painful.

  • Thanks for the replies! I believe i will be asking for the bx. Are your labs normal? Do you have symptoms?

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