When you can't get a diagnosis

I finally went to see the liver and GI doctor. Good news. I don't have PBC.

I do have AMA M2 positive, a mild elevate liver enzynes (107 as few weeks ago), an continuos pain in my right upper quadrant and lower back. According to the doctors the rest of my blood work are not high or low enough to diagnost. They think something is up with my immune system howerver, doctors can not tell what I have. And, I don't know what to do anymore with this pain.

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  • odchacon - good morning

    Can you ask for an appointment with a pain management specialist.

    Sometimes you can get temporary relief from pain by using heat therapy, either a hot water bottle or a heat pad or sometimes a warm bath.

    best wishes

  • Good Morning,

    Yes, I may end up doing that. The doctor even suggested acupuncture. Eat three small meals. He also, prescribed me a medicine to help me digest because my vague nerve is not working properly.

    Eat as healthy as possible. No fat, no salt, no gluten, etc.

    Thank you for your advice.

  • Acupuncture works on the mind its not medical. From what I read I wouldn't pay for it

  • My understanding is that if you have AMAs and the appropriate liver enzymes are elevated, then they will keep on checking you, regularly. I think for a formal diagnosis, of PBC, the relevant liver enzymes need to be elevated for over 6 months. Also, it does depend on which enzymes are affected, as other conditions / liver conditions can cause fluctuations with different enzymes. Ask for a printout of your results, in the UK this is your 'right', though there may be a small charge for copying - or admin staff time, if some tests are old and take time to search out.

    They always say there is little actual pain from the liver itself, so I would expect they will check for other conditions/liver conditions using other means: fibroscan, ultrasound to check the gallbladder, etc. I'd talk to the PBC Foundation (link at the top of this page) or the British Liver Foundation (also have a site on 'Health Unlocked') as they are the experts. We can only give advice on our experience of PBC and other liver conditions, and one of the big problems with PBC is that it is so different for many of us.

    Just having AMAs does not mean you have PBC, but they should be following up the elevated enzymes and the pain. I do hope you get some resolution soon. Have they suggested any self-help routes, like diet, exercise, stress reduction? All can help and again there will be advice at the PBC and BLiver sites.

    Take care.

  • Hi GrittyReads,

    Doctors suggested me acupuncture, a medicine (I don't have the name with me now) that is going to help me diggest normal because I'm kind of slow. I have to see a rheumatologist because I have joint pains.

    I have to eat three small meals, not fat, no salt. I have to do some walking.

    He also prescribed me some antidepressant (Paxil) hoping some kind of nerve is acting up and it may be the reason of my pain.

    Thank you so much for your advice.

  • Hi odchacon, keep us updated on how you feel. I hope the meds help you feel better and the pain goes away!

  • Thank you chynablue, I will

  • The medicine is called Bethanechol 25 mg. It suppost to help me digest. Hope to find some relieve.

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