PBC Foundation
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First visit with liver specialist

I was diagnosed with PBC after blood work and MRI with and without contrast. I was seen by a physician assistant. This Thursday I see the specialist. What questions should I be asking after stating my problems of extreme nausea, feeling full too quickly, and losing ability to swallow huge pills. I must admit to feeling very apprehensive and intimidated. I have been misdiagnosed twice with this. Any assistance with the problems and suggested questions would be so appreciated.

3 Replies



It's a lot to wrap your head around for sure. Hopefully the specialist visit will be informative.

Here's a good way to get list of questions for Dr visit--

Go to the PBC foundation- I posted link above. Join the foundation ASAP. ( it's a separate membership from this peer support group)

You create a User Name and PW ( it's free). And then you will have access to current medical-scientific info about PBC.

As for what questions to ask, once you join the Foundation- log in and you will have online access to the latest "Bear Facts newsletter". (August 2017 edition)

Print it out - its got an 8 page insert with Questions to ask your doctor. Very helpful.

Hope this helps.


Hi, I agree with Eileen: join the 'PBC F' it's free - link at top of page - and read around on their website and in past copies of the 'Bear acts Newsletter. As a member you also get their wonderful 'Compendium' of info on PBC. I think a read of this, plus writing down any questions you have, will help with the specialist, as well as copying the '8-page fact file on notes about PBC'. It's all the latest guidelines for diagnosis, etc that all liver/PBC medics should know - and GPs!! It is going to be wonderful for us: perfect for when consultants tell you that you have / have not got PBC, when you know that you have not / have got it!! - as sometimes happens!! Some Medics - gastros and even some Liver consultants - don't always know much about PBC, as it's relatively rare.

I would also make sure you have a copy of any results you have so far: on your blood work and the MRI info. Check it against what it says in the PBC summary of the official diagnostic details for PBC (the 8-page summary), make sure you are happy, and if not write down any questions and worries to ask at the meeting with the consultant.

In your case, as you have been misdiagnosed twice, it is important that the official diagnostic steps have been followed and they are sure that they are following the guidelines [ I was misdiagnosed as having PBC when I only test +ve for AMAs, but all my liver functions are normal and I had / have no symptoms. I had to go and see one of the UK's leading PBC consultants, to get the all-clear and have the diagnosis overturned].

Nb Is your specialist a liver consultant, even better is s/he a PBC Specialist?

Whatever, I hope it all goes well, that your symptoms are investigated and you are given help with those, and that you are set on the road to a much more normal life. With the medication available - and more developments in the pipeline - PBC does not have to be a major problem any more.

Hope this helps and that all goes well. Come back on here if you need to ask any more - NB it tends to be a bit quiet at weekends,

Take care.


Make sure you get copies of all your tests: see a liver doctor for sure. Once you start the URSO the symptoms you describe should start to go away or not be as severe as was the case with me, ask if you have bone disease osteopenia is what is common is PBC and if you do start the treatment mine is a supplement. Ask how often you should get labs once you start treatment some people forget to follow up. Have your family doctor receive your labs also so she knows you have this as other diseases may start to crop up that are common in PBC such as osteopenia/arthritis high lipids and hypertension Sjogrens and other autoimmune diseases hopefully you won’t have any of these but good for your doctor to look out for you when you get sick in the future, ask us here anything and don’t worry too much most people with this disease live a long normal life on the treatment.


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