Still in the dark

[Millie2014]

Hi everyone just an update and hopefully a little bit of support on this rollercoaster ride. Last month finally after 14 years I was diagnosed with non alcoholic steatohepatitis with mild fibrosis. I was finally able to put a name to what is going on and why I have been in chronic pain etc. The diagnosis was made through biopsy so I felt pretty sure that it must be accurate. There was a question mark over sarcoidosis and pbc but both were excluded by negative blood tests. My consultant asked for a second analysis of my slides by an expert histologist at kings and I have just received their findings. Results are inconclusive but does not look like steatohepatitis. It could be early stage pbc because there is bile duct damage and inflammation or it could be caused by drugs. The only strong drug I was ever prescribed was prednisolone for colitis. This did bring on pain so could be a possibility. I am confused and totally disallusioned. I thought a biopsy would be the answer but now there is still no diagnosis. I am seeing my gp tomorrow to ask for a referral to a liver hospital as I am not being followed up by my consultant for a year. I have been given no real advice and feel like I have been left to my own devices. Is there anyone else in this position? Any advice would be most appreciated.

[Hidden]

So sorry to hear your story Millie

Yes you have to be proactive in your own health care, you can go to any hospital for care! But that will involve travel back and forth. I transferred to addensbrook and they have a excellent liver unit.

Good luck

[Millie2014 in reply to Hidden]

Thank you Sudio I will ask to be referred to the closest one just for a regular checkup. I just need a bit of reassurance and to feel that I am being looked after.

[Hidden]

Good morning,

This is a really difficult position for you to be in. I am glad to hear you are going to speak to your GP about a referral to a liver specialist centre. It is important that you are able to obtain clarity about your diagnosis as this could impact on your management and followup.

regards

[Millie2014 in reply to Hidden]

Thank you I hope I will get some reassurance tomorrow from the GP and a quick referral.