Hi just recently been diagnosed with PCB.. In 2007 I was diagnosed with autoimmune haemolytic anaemia..never knew wot hit me.
I attend my Blood consultant every 6mths..over three 6mth periods of my bloods being checked my consutlant notice a increase of my LFTs.
was refered to liver specialist, has ultrasound an more blood tests and finaly a liver biopsy.
And yea its been confirmed as PCB...after a period of feeling sorry for my self I found this site, and what a releife it is to read other peoples situations an side effects ...av never felt right an due to have issues with my blood I put it down to being anemic..
I do some exsercise..love cycling but so many times I was expericing sore ankles and wrists for months before I was diagnosed..said to my blood consultant an he put it down to wear an tear..getting older..being only 44 I didny think I was that old...lol
My heart on many occasions feels like it skips beats an beats to fast sometimes it catches my breath...(thats quite scary)..my doc said it was normal for that to happin...I did feel it wasnt normal..but who was I to question a Doctor eh???
Im lucky for now as I dont suffer the Itchy skin...
I am constantly tired ...but like I said I put this down to being anemic..but at times even walking up stairs I was exausted..I did feel like a was constantly moaning about tiredness..not really understanding what was happening to my body.
Itchy ears...OMG...lol...Ive had that for about 2yrs..god it rips ma knittin that...as av made then bleed..not too bad but wi the scratching an pokin.
I dread getting my bloods done as now am scared of what else they find..bit paranoid..lol
They say life begins at 40....well mines has went pearshaped..lol
Im no a pessimistic person ..my glass is always half full...
wid like to say am great at spellin but hey ho am no...lol
Thank you all for your input on this site it has put alot oh my worries an fears to rest just noo...many, many thanks to you aw...jules
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juliewooly
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Welcome Jules, glad you found us. There is a lot of information out there on the internet but this is the only place I have found that I get true understanding of what I live with every day. My doctors are clueless and family and some friends try to understand but they don't get it. I have come to feel more connected to my PBC buddies than family and friends.
as everyone has said its a great place to turn to for a virtual "sympathetic ear", you are not alone and certainly not mad...............its a lonely place to be having PBC, and its hard for friends and family, because they always think you look OK, therefore you must be OK.
At least you have found this place now............I find it a great source if information and support.
Good luck and take the time to read all the posts, it is worth it
Hi, I was diagnosed with PBC 23 yeas ago and still doing ok. I live in Australia and have just created a Facebook page for the Australian PBCers. Hoping to get a few together and if lucky they might live close enough to meet and have a coffee and a chat.
If there are any Australian PBCers on this site would like to join...the address is
Yes, glad you found the page, Jules. I'm just here a couple of mths but reading other people's comments has defo helped me. I was diagnosed wiith PBC in July 2007 and my sister was diagnosed in Nov the same year. I'm an optimistic person too but having had this diagnosis on top of all the rest - I just couldn't take it in. My Consultant, asked, "have you understood all that,". I automatically replied, "Yes." But I was thinking OMW not another one. I attend four different hospitals - five clinics (two @ same hosp) and they're all very good. My GPs are excellent and explain things more fully, to me. So, I'm still here - as you stated 'the glass is half full'. At min having more upper abdomen scans for pancreatitis and a blocked bile duct. So I'll be happier when I've got all those results back. As the song goes, 'One Day @ a Time'. Think its the only way to deal with it all. All the best, Maggs x
I echo all of the of the above comments and will add that if you have not done so already, contact the PBC Foundation which is based in Edinburgh. My phylosophy is that my AIH/PBC is not going to take over my life. You only have one life so I intend to make the most of it. I enjoy the good days and try and pace myself, which I find works for me, and when I have tired days I rest where possible. Don't get me wrong, I do have my down moments, like we all do. We would not be human if we didn't. Once you get your head around the condition, you can just get on with things. Be as healthy as you can be and a positive attitude, like you have, goes a long way. Take care. x
Many thanks for yer comment, I feel the same and say to my self in the dark times...life is for living and you get out it wot you put in it...some days are fine an some days it just engulfs me an I just ride it out.
Tiredness is a killer but am getting there..relising now my limits as to what I can do...the joys...lol
Yes, Jules, I think this site is full of people who care about each other cos we're all in the same (or similar) boat so its great to 'talk' with people who understand. Think accepting your limitations is a big step. Its hard when you think of the things you could do before. A positive attitude which you have helps immensely. I also have scleroderma and raynauds on Wednesday night the Scleroderma Nurse gave a talk and it was really informative. The OT wrapped out hands hot wax bandages - wow, it was amazing. My hands haven't been so warm in years. So going see my OT about getting it done more often. It was good to speak to people with the same problems. Not everyone has the same problems. They're gonna organise one of these talks 3-4 times/year but not in winter as that's when its hardest to go out. I joined the PBC Foundation when I was diagnosed and and found their Bear Facts magazine very useful. Couple of yrs ago they sent me a ring binder type book called 'Living With PBC'. Its excellent. Well, gonna catch some zzzz's all the best. Maggs xx
I absolutely love reading your comments - I can just hear the Scottish Brogue with your writing.-
Sorry you have this "wonderful stuff" but glad that you found this forum. It is a good place to ask questions (as you now know), just to read other comments, put in your "2 cents worth", and even, at times, just "vent". We all have our good and bad days (even when we were "normal") and sometimes just need to let off steam. We all understand that - I think -
As LoveMyLiver said - Those are beautiful grandbabies. I know you are proud. -
Many thanks...they keep me goin an make me giggle on many a day..
Im gettin ta grips wi this PBC...as ive read through some oh the forum an at the moment I do find ma self lucky in that, at the moment I dont suffer from anything else...medical...dont know whats roond the corner but
hey ho!!! heer we go...lol
Its true wit ye say...just reading other peoples comments is a real comfort an it helps my thought process...when im havin a bad day or just to relise am not goin mad that these things Im experiencing are real.
Many thanks fur yer comments ...sorry av a habit oh typin the way a talk...comin fae the west coast oh Ayrshire...as we say its the ayrshire patter.lol
Love the site and all the comments! I was diagnosed April 09 - after a year of many tests and no suggestions from the Dr. Urso has definitely helped. Now my GP is telling me to lose 10 pounds and get my blood sugars down. I have been doing some research, and am thinking that PBC may have something to do with slightly elevated fasting blood sugars. Have an appointment with my specialist in about 3 weeks, and will ask him about it.
It is good to see what symptoms others are having! Explains many of my own symptoms. Itchy ears - I did not link that to PBC!
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Exhausted And wish I had answers.... I'm new to all of this and would love to hear other similar stories or any advice would be great...
Diagnosed yesterday with PBC
Fatigue and Muscle pain
Levels??
