Hello to you all, I have a rare liver/biliary disorder which has been ongoing for 4 years now and has progressed over the years. There is no clear diagnosis still but the symptoms and chronic pain have increased, I have severe acute pains that go on from 4-6 hours and this is happening on average approx every 2 weeks..... leaving my body to feel in trauma and not allowing me time to get over one attack to the next. I get confused, dizzy, rushes of sick, low appetite, hot under the skin, itchy, flu like symptoms, disturbed sleep and chronic pain. There has been a fair few times during these attacks I have felt like I'm dying. Weight loss has kicked in over the last few months I have two specialist who are puzzled by what is going on. As you can imagine I have many frustrations. I have recently been connected to a Hepatology nurse who has given me some extra support and who has been encouraging and sympathetic. Over this period of time my life has changed dramatically. I was too ill to work, I lost my home, my social life, a group of friends. My passion as a musician & performer, singing and playing the guitar has stopped too, although on my well days I am able to pick that up at home. I am a qualified hypnotherapist with counselling skills so I have really taken a positive outlook throughout what has been happening to me. However I am struggling to even treat the odd client these days as my own wellbeing comes first and I have to think of my client. Up until five months ago in my well periods I use to run small group hypnosis for stress and anxiety and also confidence and self-esteem groups. The benefits and comments from my clients who came to the groups were amazing! this helped me through this time as much as it helped them. I have felt very alone through this illness as there has been no answers to what is happening to me. Bit by bit fragments of my independence has been taken away from me. Im still trying to fight to bring them back. Know I am looking at others ways to stay positive and make new connections who can understand what it's like for someone like me. I would like to attend the Bath liver support group, is there anyone out there that goes to this group that would be able to give me a lift from Westbury - sub Mendip, or even Wells, Somerset, As my symptoms and attacks are so unpredictable I feel it's too much of a risk to drive to far these days. Any feedback and support would be greatly appreciated! Thankyou for listening. Wendy
Rare liver/biliary condition - British Liver Trust
Rare liver/biliary condition
Hi sorry to hear this.
You say you have two specialists. What exactly is their area of expertise. Are they hepatologists?
Hi Unique, and welcome to the forum.
Hey Thanks, never thought I would end up here 4 years ago! Good to have some extra support.
Always happy to help where we can. In some ways your story is similar to mine.
Hi unique
That makes for sorry reading ☹️. Hard to know what to say really except to hope that you do get some answers, and solutions, soon...
Angus
Thanks Angus, I am trying to stay as positive as I can be, but it's tough at times.
Hello I have primary biliary cholangitis diagnosed about 10years ago around 3 years ago I started getting flu like shivers pain episodes the pain was terrible I also felt during attacks that I was dying I also had red eye attacks and a few other symptoms finger nail hemorrages swollen fingers nodules, my symptoms always started at night.During this time my liver result also worsened. I got to the point where attacks were coming increasingly frequently and I was feeling awful all the time and I had to give up work.After seeing a number of rheumatologist my probable diagnosis is vasculitis and I've been put on immunosuppressive drugs.These have stopped the severe attacks I still have symptoms weakness fatigue and pain especially in legs at night but less severe than during the attacks and unexpectedly my liver blood results have also improved.So maybe that there's some link with my liver condition.I hope you get some answers soon and some help to feel better.
Jane
Hi Unique
Im under investigation for the same thing which my consultant says could be in the early stages but so far no 100 per cent confirmation but I do get all the symptoms which hit out of the blue!
I really feel for you as flu type symptoms are awful with this disease which I've suffered with previously but didnt have the flu but there so draining when they hit!,
I do hope you two consultants can improve your life style as it's an awful debilitating disease!
Sorry cannot help on lift as I live in Shropshire but would have if lived closer.
Take care
Shropshire Lass xxx
Thanks for your message, I do hope I find a support group near me. I need it know. Take care and be kind to yourself.
My fingers are crossed for you! Please keep me updated if you find one!
Take care of your self in the meantime!
Todays not such a good one for me errrr
Love Trish x
unique4 - I have PBC (diagnosed 8yrs but had it much longer). I NEVER heard of anyone symptomatic waiting 4 years for diagnosis once they have been seen by a specialist. Are your LFT's normal? The PBC Foundation, free to join, expert in all things PBC, superb, supportive, advocates for their members, will help you if you contact them. There may be a PBCF group nearer to you, or you could even start one with the Foundation's help?
BTW, you know I'm joking with the post-it-notes, right? Just a fantasy I have on the odd occasion if I'm patronised or not listened to in the consulting room 
Go very gently and kindly to yourself, do what you love, pamper yourself. Rest as much as you need. exercise as much as you safely can. Eat small, often, low carb, low fat, low salt. Avoid alcohol. Best wishes
Sorry to hear that 4thPlinth. How do you cope with it? Apparently I'm a mystery case. My ALT'S and LFT'S are all over the place they never go back to normal markers. I will certainly try to find a local PBC group, thats what there testing me for ATM. I also show that I have smooth muscle weak antigens if that means anything to you? I don't really understand what that means.
Your sense of humour brought a smile to my face, I do struggle with one of my consultants, I always am prepared with questions when I see him. Maybe he knows how frustrated I feel when they say we still don't have a diagnosis. I stopped drinking alcohol a long time ago not that I was a heavy drinker before, I do notice the liver is unhappy if I have the odd glass of prosseco, and it goes straight to my head. Thanks for the tips. Take it easy
unique4 - I don't know for sure the answer to your smooth muscle weak antigens questions, but I do know some peeps test positive for AMA's, don't have PBC but remain on the 'watch list' for it. So, you are a 'mystery case' are you? Ask what tests are needed to solve the mystery, and whether they can afford to let you have them?
Once you get a diagnosis you will begin to feel better, more in control. How do I cope with it? "It", the problem of PBC, changes shape all the time. I only attend to the problem of the moment, in that moment, and if there's any time to spare, I look around to see if I can find a way to a avoid or lessen the recurring problems. I laugh mostly. It isn't funny of course. But I get a sense that there's something totally ridiculous about it. I like your liver getting fussy over the "odd glass of Prosecco"! It's good you listen to it.
Hello unique I have been having symptoms of extreme pain requiring hospitalization. During these episodes my liver enzyme tests have escalated. I have chronic daily pain difficulty eating without feeling worse, indigestion and extreme fatigue. My gastro dr diagnosed me with ulcerative colitis in 2005 but in all this time cannot explain the continuing problems I am having. They are not colitis related. I finally got a fibroscan which showed moderate fatty liver and mild fibrosis. This led to a biopsy this year which after being looked at by 2 Drs is still inconclusive. Their opinion is possible pbc, possible drug damage or possible steatohepatitis. I totally sympathise with your predicament. It's the worst thing not having a diagnosis but I have managed to get a referral to kings college hospital in November and I am hoping that they will be able to help. Do you have any damage to your liver at all? Do the Drs have any ideas what it could be?
Hi Millie, I can certainly emphasis with the taunt of severe pain! It's no fun. I feel like the Incredible Hulk sometimes as my face has hardened to the pain. Good luck with your referral to kings college hospital, I do hope they can shine some light on the situation for you. I am also under a professor in royal free London hospital who also runs a private clinic but he had a theory to put stensis in the main bile duct. The op was high risk and had a low rate of reduces any attacks. After having a biopsy my body went into complete shock and I was hospitalised. The biopsy showed some damage cells on the liver and also to the main duct from the liver, but nothing significant to make a diagnosis. I refused the op as there wasn't enough evidence to support it. I am waiting to hear back to see if I have PBC. I have made my own diagnosis Liverish tuberlitis, it makes me feel better!
Hi unique I also have had 2 incisions in my bile duct to widen it as a Hida scan showed slow drainage of bile. Both these procedures have done nothing to ease the pain or other symptoms. I have had a few episodes of pancreatitis too but the pancreas itself looks fine. My gastro Dr seems to think that the pain in the liver area has nothing to do with the inflammation and damage shown on the liver biopsy. It's very frustrating. I hope that you get some answers soon. In the meantime liverish tuberlitis has a good ring to it. Perhaps I have it too! Have a good day.
Hi Unique. There are 2 rare liver conditions that affect the bile ducts, PBC for which there is treatment and PSC which is more complicated. Have these been ruled in or out? Ah, I see from a subsequent comment you're waiting on PBC as a possible diagnosis
Royal Free has a good liver team for rare conditions. You're right in that having stents put in is not without risk, but all operations have an element of risk. If the bile ducts need enlarging that may be the only option. Have you had an MRCP to check for PSC? It's PSC that affects the large bile ducts (PBC affects the small) and is not diagnosed via biopsy, which may explain your inconclusive biopsy, however it should have helped to rule out PBC and AIH and avoid misdiagnosis. There's a really informative PSC support group I can link you to if you're interested
Good afternoon Bolly, I have had a couple of MRCP to check ducts, pancreas and liver, waiting on results from the last MRCP, it's been nearly 3 months and i'm still waiting on my results. I called up to chase it about a month ago, still nothing through the post. I would appreciate it if you would link me tot he PSC group. Docs don't think its AIH however there not sure!
Hi Unique, as you’ve already heard, your symptoms are similar to a lot of ours. I also have/had PBC, and had transplant in May. Since then, all those symptoms stopped!!
I’m guessing your consultant is at RUH, where mine is. I’m not aware of a PBC support group locally, although there could be one. I know there are local sufferers.
I did like 4thplinths reply. He’s right, all the symptoms change around, and you just have to get your head around each one. I was only diagnosed with pbc less than 3 years ago now, at a time when I was symptom free, but then they rapidly came. Personally I found the support and care from thE RUH, and latterly the QE in Birmingham to be first class. Stick with it, you/they’ll get there.
Do feel free to pm me if you want local chat, I live in Trowbridge.
Hi unique, sorry to read of your troubles, but something you said rings alarm bells for me, so I'm going to throw this out there, I hope you don't mind? I know what it's like to go undiagnosed. You said you get "attacks", have you been tested for porphyria or has it been mentioned at all? The acute porphyrias generally cause attacks of severe pain, usually abdominal, but can be chest, back or limbs with no obvious physiological cause, mental problems ranging from confusion to psychosis, muscle pain, numbness and paralysis, breathing problems and even coma. Is your urine a normal colour during these attacks? There is a page on the BLT website if you'd like to look at it and see what you think? britishlivertrust.org.uk/li...
Private message me if you'd like,
Stacie. Xxx
Thanks for info, I will look it up.
Talk to your doctor about
- hepatitus
- typhoid fever
- tca and mri full body scans
- iron over load and
- hypervitaminosis
- gastones detox talk with nutritionist about it, 3 day regiment with epsom salt and olive oil.
- kidney disease or infections or uti
- go to a chiropraticioner ( bone cracker)
I used to have that pain because i drank too much "moringa tea" and fatty liver
I started to drink borututu tea and all pains stopped, no jaudice, no weak bones, no swollen liver etc
Hope it helps, get well soon
Very helpful tips, my consultant is going to love me when I see him next.
Maybe he's reading this to find differential diagnoses...
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