waitibg

hope all r well..i was diagnosed a yr ago with pbc..because of some doubts with the dr i had i took myself to a liver clinic...they took a blood sample and that blood work said i have no antibodies for pbc...they took me off urso for three months that will be in june i go back and take a complete blood panel but as of rt now they dont think i have pbc..idk how a dr can misdiagnosed something like liver diease i am a little worried being og urso for 3 months tho coz if i do have pbc its been working thxs for listening

[Aussielouise]

Hi

It’s a tricky disease to diagnose to start with. Took me a while and I do have a positive Ana and ama. I had a biopsy to get a definite diagnosis and a elastography. There are variants of pbc that do not always mean the patient has to have a positive marker, that’s where biopsy can help. I wouldn’t be concerned about coming off urso for only three months, and if liver tests start raising again that will help them find your diagnosis. Keep positive, yes it’s a liver disease but for most people it’s not so terrible.

[butterflyEi]

As Aussielouise has said it is a difficult disease to dignose. For most of us PBC is a slow progressive autoimmune disease so I don't believe that 3 months will do you any harm. It took over 10 years for me to get my diagnosis and was at the time of diagnosis still asymptomatic. Apart from URSO for most of us the advice is eat well, exercise and keep hydrated, avoid all processed and sugary foods. Hope this helps.

best wishes

[ninjagirlwebb in reply to butterflyEi]

Did they diagnosed you while they were testing for something else?

[Hidden in reply to ninjagirlwebb]

ultra sound of my gallbladder someone saw something on my liver sent me to gastroligists who did blood work

[butterflyEi in reply to ninjagirlwebb]

Hi ninjagirlwebb

To answer your question - I presented with itching around 1996 the doctor suggested three different things none of them liver related but those three things had the suggestion that it was in my head! From 2001 to 2004 I struggled with menopause problems and was given a hysterectomy in 2004 sometime around late 2005 I knew there was something still wrong but could not get an answer from the surgery, a local chemist was offering blood test so I took advantage of this service outside the NHS, the results came back elevated and it was suggested that I go to my doctor when I saw her she just told me to give up drinking which I did for 12 weeks and still knew something was wrong so went back and saw another doctor who repeated the tests. Going back to the other doctor for the results she very reluctantly referred me to a specialist who then in the summer of 2006 after a biopsy diagnosed PBC and prescribed URSO. Since that time I have suffered the ignorance of those doctors that one has to see along the way and am grateful now to have a wonderful hepatologist who is kind and caring and most of all competent. I have little confidence at the GP level as they seem to be so budget oriented it is difficult to get help with other matters and often feel belittled when I see one particular doctor who always says ah! the lady with PBC. oh dear! I think this has turned into a bit of a rant but that is the length and breadth of my getting a diagnosis.

best wishes

[ninjagirlwebb in reply to butterflyEi]

I hear you on the challenges of your diagnosis & medical staff interactions. Great that you have a good routine now. It is because PBC is so rare & most medical folks don't know anything about it. Even my GI knows nothing about the condition. But at least he was smart enough to know it was beyond him & sent me to a hepatologist.

[GhostHunter]

I was diagnosed with PBC by my Gastroenterologist by blood work which showed elevated ALP, ALT, AST, and AMA marker. Shortly after I switched to a Transplant Hepatologist who confirmed it by liver biopsy. My daughter now has elevated ALP, ALT, and AST, however her AMA marker was negative and her Gastro said she does not have PBC, so I took her to my Transplant Hepatologist who told us that in the early stages of PBC it is not unusual for the AMA marker to be negative, so she will be having a liver biopsy done which will make a positive diagnosis. Good luck in finding the answer.

[Hidden in reply to GhostHunter]

thxs ad hoping ur daughter will be ok