Finally saw the liver specialist

Hi all,

So 2 years after testing positive for AMA's and ANA's I finally saw the liver specialist. I have a lot of symptoms and am undera gastro, neuro, rheumatologist and then Physio and podiatry when I need them but my only diagnoses at the mo are arthritis and hypermobility.

Anyway, he said I have 'an autoimmune disease' and obviously I do have the antibodies but they are not yet attacking an organ.

I'm intolerant to most painkillers; codeine, dihydracodeine, gabapentin, pregablin, amytriptiline. So I've finally got a long term prescription for a few diazepam a week. They've been funny about prescribing it to me before but it's the only one I know I can tolerate.

I'm seeing him in a year again but I just feel really weird now. He said I might get PBC or autoimmune hepatitis but just live my life and enjoy it. I've just gone on antidepressants and i was already on beta blockers so maybe I'm just taking it badly.

Thanks for reading, just wanted to vent.

Laura X

3 Replies

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  • What is AMA/ANA? I'd guess your are referring to Antimitochondrial Antibody and Antinuclear Antibody...

    Many who read this forum are not familiar with all the acronyms that plague the world of medicine and health and it encourages useful feedback if you can be clear about diagnoses and tests.

    No doctor can ever be definitive in their diagnoses – all sorts of things 'might' happen especially when a patient has multiple chronic conditions, but they might not! Doctors can only express their opinions on probabilities. This isn't always very useful to the patient who is anxious about their future and who is seeking reassurance and certainty. As a patient suffering from a chronic condition who has been told "just live your life and enjoy it" myself, I understand how frustrating this can be, but have come to realise that it is advice that can be both practical and useful.

    Often the psychological effects of having a condition can be just as detrimental to your overall health as the condition itself – so look after your mind as well as your body.

  • Hi Laura,

    I can understand that you feel weird nowadays, but what your doctor said is true. We should live our lives best and enjoy as much as possible, since we have just one life.

    I have been diagnosed PBC and after overlap syndrome because I have autoimmune hepatitis at the same time.

    AMA is positive and I am taking Ursactive for two months already.

    ANA is negative but similar to AMA pattern is positive. Well, I have the antibodies but they are not yet attacking on my liver. I guess they are gonna do! I have next appointment at the end of September. If they start attacking then I am afraid I am gonna take cortisone therapy.

    We have chronic condition and first of all we have to accept it. Three months ago I was a different person. I accepted my condition and live my life as normal as possible and enjoy my time. Some day we are gonna die but nobody knows if it is because of our chronic condition or something else.

    I advise you accept your condition and live a healthy life with eating and moving.. just like I do!

    Sam :)

  • Hi Laura,

    I am the same way - I have AMA antibodies but they are not attacking my liver yet. Well, I guess it would be more accurate to say that no damage shows up on my imaging scans.

    I have had some trouble with my liver due to fatty liver disease, so my doctor went ahead and put me on Ursodiol medication. I do feel better now that I am on it.

    But, like your doctor says, just live life and see him in a year. There's nothing really to be done until they start seeing signs of damage, like abnormal blood work or signs of damage on imaging scans. Try to be healthy, and try to keep inflammation to a minimum, which in your case is easier said than done! Arthritis is no fun. I'm sorry you have to deal with that as well.

    The good news is that AMA antibodies indicate PBC (although more testing is needed for actual diagnosis), and PBC is usually a very slow progressing disease. Sometimes it never even progresses enough to show any damage. ANA can indicate autoimmune hepatitis, which some cases never progress to show disease in this case as well. When you have the antibodies but they are not attacking, its like the gun is loaded but nothing has pulled the trigger. Maybe nothing will ever happen. But if it does, your doc is ready to catch it early and treat it because he already knows what it is.

    If you run into any symptoms, let us know. There's lots of knowledgeable people on this forum.

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