Does anyone have any experience or mention of Primary Biliary Cirrhosis being involved in their diagnosis?

[Glenys]

[debi_p]

Me Me Me I was dx with PBC in sept 11 and Fibro Jan 12. Most of the symptoms ie Fatique, aches and pains etc are the same. Do U have PBC too? Christine not many people have heard of PBC its relatively rare so I heard but there are sites which seem to disagree with this. Its an autoimmune disease that affects your small bile ducts in your liver, no cure but not terminal. Hope this helps tho not much info lol

[Karolina in reply to debi_p]

I have PBC. The disease is terminal, there is no cure. My liver transplant was in October, 2001. I went into organ failure and a coma. The transplant was a week later. It has been ten years and I am on an expensive immunosuppressant daily. My general health is good. PBC is autoimmune and mine was diagnosed with a positive AMA...it was very difficult to diagnose. I had no symptoms, just elevated LFT's indicated on routine lab tests. Make no mistake...the only cure at this time for PBC is an organ transplant.

[Gillimarie in reply to Karolina]

although there is no cure, if detected early enough it can be kept at bay and they may never be a need for transplant.

[cowren]

Hi Glenys I have PBC dx June 2011 I have the same question I have appt with my Liver consultant tommorow and will be asking the very same question. I will update when I get back .

Take care Xx

[Hidden]

OOh i have been having problems with my liver and no dx as yet - "deranged" Blood tests. This could be totally unrelated as states (rare) but worth looking into further and mentioning to GP, whom thought it maybe because of medication I am on. You learn something new every day. X

[Glenys]

The reason I asked, was because recently I found out about the similarities between FMS and PBC, and also remembered that my mum had PBC. It went undetected, which led to cirrohsis (which IS rare, although PBC isn't).

It's weird because I always used to think deep down that mum had Fibro as well as me, but of course in those days (1970s-early 80s) if you presented to your GP with pains and depression you were bunged on painkillers and antidepressants, pretty much as you are yoday, but with no "label" of Fibromyalgia attached to it.

Now the tables have turned and I'm beginning to think its the other way round with Fibro being my misdiagnosis!

Going for my PBC test on Friday, as the GP agreed it was too much of a coincidence and needed looking into. However around 3 years ago another GP I spoke to though I was over reacting!! So you have to stick to your guns.

[Glenys]

Hi Cowren. Did it go OK?

[Gillimarie]

have just posted a question asking this as i too have a dx of pbc which came about through routine blood tests then a dx of fibro as well a year later, i read that they are more common together than people think.