Finally had the dreaded official diagnosis­čś×

Hi everyone. Today I was finally hit with the official diagnosis of Pbc. After 4 months of worsening Lft's , 2 ultrasounds, 1 mri and a ct scan. Also 2 positive Ama tests. I am feeling scared but thanks to groups like this I was very much prepared to face this diagnosis. I still am not sure what lies ahead entirely but doctor says my prognosis is good. I am kind of relieved to finally have the answer but still feel quite scared for the future.

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  • This is a great group of people. I just joined yesterday and have had so many people share their stories.

  • I was diagnosed last year. I felt exactly like you in the beginning. It was very scary. But, I am taking Urso, go for regular check ups, LFTs look better. Nobody knows what the future brings. The best you can do is to stay active, eat well, take medicine and don't focus on PBC. The saying goes like this: You are likely to die with PBC than from PBC.

    Stay active and enjoy your life!

    All the best to you!

  • Thank you for your reply. I count myself lucky at the moment. My liver and bile ducts are not damaged and I have very few symptoms currently. Tiredness is my main problem at the moment. I haven't started Urso yet but hope to in the next few weeks. I am only 33 and have 2 young children so have a lot to live for. I am generally quite active and do keep fit classes. I am determined to live life and not be defined by pbc.

  • I got diagnosed last year after years of getting sicker and seeing too many doctors. I was shocked and scared at first , then came on here and talked to these lovely people and felt much better about it all, I still get upset I have this disease and progressed 2 stages while floating doctor to doctor for years but now I am greatful for my life and that I am a responder to the URSO , hang in there and keep in touch here along your journey we are not alone here.

  • Hi,

    I'm not surprised that you are scared. Being diagnosed with a long term condition is scary. However, whilst everyone on here will have a different story and journey with their PBC, I am so heartened by how positive and resilient so many people are. It seems very possible to live well with it and , like you say, not be defined by it.

    I'm really sorry that you have this diagnosis at such a young age but it's lovely to hear your determination too. My advice, especially having 2 young children, is to make sure you look after yourself. Find what works for you, rest when you need to, play when you can and (if possible) don't over do it. If you haven't yet joined the PBC Foundation, do. They are such a knowledgeable, supportive organisation. Wishing you all the very best, Cx

  • i am sorry about your diagnosis. I am in the waiting period as I have more test to go through. I have two young children as well 1 and 3 years old. I am very scared, but i know I will be ok and move forward if and when I receive the diagnosis. take care.

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