Diagnosed today:(

Hi:) My name is Louise and I found out today I have PBC and although it needs confirming from the little research I have done it seems pretty certain. I have my referral to a consultant and one for a scan. I am slightly worried that I have had heartburn for years and years and that it might mean I have had this disease for the same amount of time. I don't seem to be displaying many symptoms other than a sore arm at the min. Feel like my head is going to explode and with 3 small children under 5 I am worried I may not be around for them:(

16 Replies

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  • Welcome to this website Louise you'll find so much information,you need to join PBC foundation they will send information about PBC,I was diagnosed 11 years ago.

    The support and help you can get from everyone on this site is amazing .

    Good luck to you and take your time reading everything on here there's a Lot of information on here.

    Neata

  • Hi and welcome. I agree with neata this is the best

    Place to find information. I have only been diagnosed

    A short while and it's very scary, but these poeple on hear

    Are just great and the PBC foundation is so helpfully . Try not to

    Worry . Easier said than done I know , it's all I ever think about at the

    Moment, any way stay strong . Much love x take care

  • Hi louise . I too was recently diagnosed with pbc and am waiting to see a consultant at the hospital. i had a scan already. I too have suffered from heartburn for over 10 years and have been taking omeprazol every day for that time. As others have said try and stay positive it neednt be a life sentence , more a change of life. Im still trying to get my head round it all . i still dont know an awful lot and to be honest im not expecting much from my hospital appointment as i have already learned most about this disease from this site and the great people on here. Hopefully you have a good family who will give you support as not many of us here seem to have that. Let us know how you get on. Big hugs

    jax

  • Aw Louise I felt like you when I was first diagnosed. Now I have a great support group and info from the PBC foundation is invaluable. They will also put you into contact with people in your area, if you want to. I was diagnosed in 2009 and was fairly sympton free at the time apart from terrible heartburn. My consultant told me that I had every chance of collecting my old age pension (I am 49 now). I have made changes, I am a much more positive person and take every chance to enjoy myself. Having a poisitive outlook helps me. Once you come to terms with it, accept it and adapt, you will settle down I am sure.

  • Hi Louise,

    We have all felt, feared, been and are going through exactly what you are right now. You will learn to adapt and come to terms with your condition...you must just allow yourself that time!! Some people do not have symptoms..I believe its called asymptomatic.

    I was diagnosed in Jan 2011 from blood tests carried out by a rheumatologist. My symptoms were severe joint, bone and muscle pain. Following diagnosis I could not come to terms with it, I was absolutely terrified and buried my head in the sand. I discovered this site last may/june...it has been an absolute godsend....I have learned so much and with the help and support of everyone on here now have a more positive outlook on life.

    Having PBC does not mean a life sentence...I recently learned that a lady who was diagnosed at 51 (I was 50) is in her 80's and still going strong...so be positive you will be around for your beautiful children.

    Sending Big hugs and best wishes way

    Cheryl

  • Hi Louise, just to echo what others have said. PBC isn't a death sentence. I am also a mum to 4 young children well I was when I was diagnosed 11 years ago. My eldest is now 18 and my youngest 10. I still get the odd tearful moment when I worry about the impact my health has on the children, but I really believe that everyone should be living life to the full.

    Give your self time to absorb the information, arm your self with the correct sort of information, (the PBC Foundation has some of the most up to date information available) Avoid message boards and face book groups that are filled with horror stories, you don't need it and they are rarely true! Ask lot's of questions and write questions down as they come to you. Your consultant will not be surprised or offended if you go in with a list and or someone to support you.

    And look forward to a lovely time of year with your lovely children.

    Keep well and good luck with your upcoming appointments.

    x

  • Hi Louise

    You are in the right place. As you have been told the first thing is to join the PBC Foundation for accurate information. The next thing is to take the advice of your specialist. The third thing is to accept you have PBC and then get on with your life.

    I am 72. I strongly believe that my mother had it and she died at 92. I have been told that I will die with it not from it. It is the shock of being told that is so frightening especially when you are so young.

    Enjoy your family and look after yourself.

  • Hello Louise.

    I was diagnosed with PBC Dec 2010 after starting with the itch earlier that yr. I also had a scan after numerous blood tests which a few mths later ended with an hospital appt and the AMA blood test.

    I'd never have thought anything about myself had I not started with the itch. I only have that particular sympton tho' I was fatigued back in 2010 prior to diagnose, probably more than likely due to excessive working hours.

    It was said I had more than likely had PBC 'for a few yrs' but I am of the thinking it's no use worrying about something that has gone, have to deal with the now.

    The hardest part for me was being given the PBC label and then knowing that it is something that I am stuck with, that will never go away regardless but 2yrs on from starting urso, it's not been all bad. Yes I am still plagued with the itch at night but at present it is the best it is probably going to be for me. Like Oidra says here, it's more than likely going to be a case that we are going to die of something else and not with PBC.

    Now you are waiting for PBC diagnose, best thing you can do as I did before diagnose was to start looking after yourself that bit more even if like me you thought you were prior.

    Get stuck in with the family and like me, there will come days when you don't actually think about the PBC and feel wholly normal again as I do often.

  • Hi Louise, I am in total agreement with everyone who has written. When I first found out that my blood work was not what it should be and was given the diagnoses, I was in shock, but not surprised after reading up on it.

    I had quit smoking three years ago and put on quite a bit of weight. Thinking that my lack of energy was due to that, I kept thinking I have to lose some pounds so I can feel like going to the gym again. I also thought that maybe I was depressed. It never dawned on me that I had an ailment. At 65, I never took any meds for anything other than an occasional headache. I still have kept this diagnoses to myself. I don't want anyone treating me differently. I don't look or feel ill. Luckily for me, I am asymptomatic, and for that I am eternally grateful.

    Urso has made a huge difference, but so has eating a liver supporting diet and losing almost 20lbs. The most important thing is to read the truth on the foundation site and the testimonies of all the loving and thoughtful people on this board; without them I would have felt so isolated in my fear. Now I have a more positive attitude and look forward to a long and vibrant life. I wish the same for you. There are days like Peridot that I also feel like my old self and feel somewhat normal. Don't give up and try with all your might to focus on the good things and people in your life. You have an enormous support system here. Sending love and healing thoughts your way.

    Judi

  • Hi Louise, I was diagnosed after years of going my doctors with severe fatigue and severe itching. It took them - I think - about 6 years for them realize that I had PBC.

    The people on this site are all amazing people and it's comforting to know other people understand what you are going through because sometimes family and friends don't understand what you are going through. I do have to say though, I don't come on here as much now as I used to. I didn't realise there was so many other conditions associated with PBC, and as the saying goes "what you don't know, won't hurt you". I began to get symptoms of other peoples conditions...now, whether that just a psychological thing, I can't say, but I try not to read too much...but thats just how I handle it, it works for me. But as I mentioned earlier...the people on here are very suppotive and always there.

    Good luck Louise with the scan and god bless.

    Ange

  • Yes, all of the above. Good advise and great support here :). It takes a while but you will get there Louise. I wish you the best of luck. Keep us posted.

  • Hi Louise and welcome,i agree with all the other comments,I was devastated when i found out but as the days go on things do get better.xx

  • Hi Louise, I'm 64 yrs old, and could have possibly had this disease since 1987, 93, or 97 for I had the elevations in my liver panel since then. There was even a biopsy done in 97 and the Dr. still couldn't tell me what it was. By 2003, my ALK shot over 500 and finally another GI dr. did another biopsy and sent it to the Mayo Clinic, and they confirmed it was PBC, AMA neg., stage 2 at the time.

    About one yr. ago was my first symptoms with the itch, which lead me to seek out this group. They are wonderful and will take the time to give you an answer if they have one. I did have periods of unexplained fatigue over the yrs. The reflux is a problem with me also, and was given Nexium for it in 2003. I have taken the ursodiol over 9 yrs now, which will slow down the progression of the disease. Welcome to the group!

    Magnolia

  • My dear,

    My name is Claudia and I live in Brazil. After much itching, exams alterarados (tgp / GAMA / TGO), no doctor knew what I had. Said to be gall! I found my own diagnosis through google. I went on a website that said exactly what I had. It's been 5 years. Tomo ursacol (900mg), calcium, vitamins A, D, E and K, sertraline and atorvastatin (to lower cholesterol), and questram (affffe)

    The delay in diagnosis, my disease was already advanced. But with every care has not progressed.

    What scared me most with this forum is to delay the British physicians in making the correct diagnosis. I thought this only happened here. To have a correct service have to pay a hepatologist particular that costs $ 200.00. The Ursacol the government provides.

    It is not an easy disease, but with calm and care you will be able to control it. Do not stress, because everything worse.

    Be happy.

  • Hello everyone,!

    I was dx in May 2012 ,I have tried leaving my concerns/ comments & questions and just didn't

    I feel so out of brain cells because i can't figure this out. I like my dr but she has admitted she

    Has to do more research to answer some of my questions. I have learned so much on this

    Site everyone is just wonderful. I have had blood work, biopsy, scans the dx was cofirmed

    Along with AIH per mayo clinic. I do not look like the same person i was 6months ago

    My face & back and stomach are very puffy. I am not complaing thats just all part of pbs/aih

    What is a good liver diet? Also my cholesterol was so high that lab couldn't even get a read

    But none it is 588 coming down i am just sick about all of this. Thank you to everyone for

    Helping. Thank you amti

  • Hi Louise,

    I was diagnosed in Mar this year but kind of new it was PBC since the summer before. I, like you ,have 3 kids (7,4 & 14months) and at first I was just so distraught my quality of life was going to be affected. Joining the PBC Foundation and getting myself informed was one of the best things I did. I buried my head in the sand for months however I have now spoken to 3 ladies in my area who have the condition and hope to meet up with them soon. It takes time but hopefully sooner rather than later you will be able to accecpt the diagnosis. I now find myself going ages before I've actually even thought about it which is certainly not something I could say a few months ago and I am now excited about life again and getting on and enjoying the family.

    Sending much love and heaps of positvie thoughts your way.

    Mel :-) xxxx

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