diagnosed with PBC today 23/04/13

Hi Everyone,

I would just like to say that after being told by my doctor today I was very down. However on the information he gave me was the details of the PBC foundation. Reading your blogs has put things into perspective and I am now positive that I can keep this at bay following all your great advice. Thank you all so much!!!!!!!!!!!!!!!!!!!

10 Replies

  • Good luck, it is like a hit in the face when you first hear and some days are not the best, but as you say this site is the savour for most of us :)

  • Hi Aston, I was diagnosed in November and felt totally devastated, it can be difficult to get your head around the fact that you have PBC. Once you do you realise that you have a life that is very much to be lived, and you begin to get things into perspective. The forum is invaluable, it sounds like your doctor is quite switched on with regard to PBC. When do you see your consultant, have you been started on URSO yet? Stillbeiing quite a newbie myself I often post questions as they come to me and the wise sages of the site usually have an answer. In the early days it was such as comfort to read posts from some of our senior members who tell us that they have had PBC for over 20 years. When I was first diagnosed I remember thinking "I am not ready to die yet". I now know that the disease progresses very slowly, and as I said before I intend to have many more years of living an active and productive life. You sound like you already have a very positive attitude in terms of your PBC, take care, and post as often as you feel you need to.

  • Hi I was diagnosed at 27 and i was in comma for 3 months but my life didn't finished for that im very brave and i tried to enjoy every day and be positive.I take Urso and i get my blood test every 2 months and im totally fine,thaks GOD.

    I wish you the best.


  • HI

    It is a shock and almost a wake up call, but it also explains why you feel like you do and that you need to look after yourself as best you can.

    Good luck and keep positive


  • Sounds like you have a sympathetic doc so that's a massive bonus - I was given no info and told that it was next to nothing (despite feeling like I was dying!) Thanks heavens I was able to find PCB Foundation by myself or I think I'd have gone mad! Take all the advice you can get from the Foundation and Collette will be happy to speak to you if you have any other questions (she's a star and derserves a medal for the work she does) :)

  • Hi

    I am understand how you feel, I felt like I was going to die thinking I was leaving behind my 3 children under 5. It has now been 8 years since I was diagnosed and I get good and bad days. I take each day as it comes and when I feel down, i look back how far I have come. It can take a while to comes to terms with it but go with the flow. This is a great site with really lovely people that I'm so glad they are here to share pbc through the up and downs.

  • HI Astondb9, I remember that moment when your tummy turns upside down. I've been diagnosed with PBC 7years. At first you research and hope ... Sometimes I've seen people look for "How long have I got" . PBC is something you live with - not die from..

    (not really ! ). Get settled on your medication, keep a watchful eye on all your tests. Everyone has different daily symptoms - You will be fine....Yep this is a great site for support.

  • thank you all for your comments as you say it is very early days yet! I had already had a course of B12 injections and iron and folic acid before I was diagnosed as my doctor wanted to replace them as well as continue the search for a diagnosis so have more energy already! Have to repeat blood tests in 3 weeks and go from there. Hope to get referred for an ultrasond on the liver and then start on the drug! Have already started to change what I eat and had my first night out with work since the diagnosis and was the only one not to have a drink but it was ok at least I don't have a sore head today!

  • I'm a week behind you on the diagnosis, and although the ultrasound last month was 'clear', my doc wants to take a deeper dive and conduct a biopsy soon to help assess where I am. I'm still in shock over hearing the news that I have such an uncommon disease, that I haven't even be able to tell anyone in my family yet. In light of being down, I'm thankful that I've found this group that I can lean on for support and answers.

  • Hi there, I was diagnosed 3 and a half years ago .... Its devastating at first, until you get more information and realise it is not the end of your life. Take care xxx

You may also like...