PBC and Memory: How Have You Been Affected?

Now, I know many people with PBC have spoken about memory issues over the years. It has also struck us as an organisation that medics have been slow to take this on board as a PBC issue.

So, is there any way we can categorically state the problem. Is it possible to give an answer here with:

age, length of time diagnosed with PBC, when memory problems started and what they are?

Perhaps, using this material, we can take it to the medical advisory board and have some serious discussion around this matter.

40 Replies

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  • I am 50.

    I was diagnosed with fibromyalgia early 2010 and PBC Oct 2010 although my liver function had been bad since 2006. My memory has never been great but over the past 12 months is awful and certainly getting worse. I call my children the wrong names and also refer to the pets we have wrongly aswell by using names of deceased pets instead. Have driven past my road on the way home and nearly through a red light at a junction. I just cannot concentrate on two things at once. I find this the worst part of the PBC and to be honest am really frightened by it. I can cope with the fatigue through resting and can cope with the itching. If it carries on getting worse then I will have to give up driving and will then be housebound, and will it get to the stage where I dont know anything?

  • i am 56.

    i was diagnosed with PBC in Oct 2010 after 2 yrs of the doctors ignoring the AMA positive and concentrating on my anemia as my level was at 6.

    my memory started to be affected around the same time as the anemia, but i was also starting the menopause, was very tired/fatigued and have since been told my vit.D level was low. As all of these things can affect the memory it is difficult to say that it is just because of the PBC.

    i have been in tears sometimes because i cannot remember something i needed to do or say, my concentration has also been affected and i cannot multi-task as i used to. it is very frustrating.

  • remembering names, words are oh so difficult. agree with Wendy about the concentration. Used to be able to multitask easily but now i cant even remember one thing let alone 2 or 3. it frightens me badly as my Nan died with Alzheimers disease and i feel like im going down the same path some days. Memory problems started last March (2011) was diagnosed sept 2011.

  • I am 36 and was diagnosed with PBC 3 years ago, although it had been apparent for some time before that there was something "wrong".

    I had always prided myself on having an excellent memory but suddenly I couldnt remember peoples names, birthdays, events, details of social events etc. I also found that where I used to be an excellent speller, I couldnt even remember how to spell simple words (thank goodness for spellchecker!!).

    I have lost the ability to multi task. Cooking a meal is extremely difficult as I find it impossible to get things requiring different cooking times all ready at the same time. Something is always raw and something else is burnt or overcooked mush.

    My work has been impacted, my attention to detail is no longer there and again it is impossible to try to do more than one thing at once.

    In my experience, the medical and benefits world do not seem to appreciate the impact that the symptoms of PBC can have on your life, indeed they do not seem to all agree on what the symptoms of PBC are!! The only people who attach any seriousness to it are travel, life, medical insurance companies etc who wont touch me with a barge pole!!

  • My memory is so bad, I've just been trying to get onto this site for 10 minutes as I've forgotten my password! I agree, this must be the worst symptom of PBC. I can deal with the physical symptoms, I've always been more cerebral than athletic, and so memory and concentration problems are having a huge impact on my life. I'm 41 and diagnosed with PBC Nov 2010. I struggle to remember people's names any more, including those of my children and pets. Reading is extremely difficult as I can't remember the plot, and I drive everyone mad when I'm watching a film, as I don't know what's going on. I think I may have to give up work soon, as if I make a mistake there, it would be a disaster. I am also worried about driving, as I found myself driving on the wrong side of the road the other day when deep in thought (luckily nothing was coming the other way). I'd not thought about spelling before, but that has definitely got worse. And multi-tasking is impossible. I'm hoping this is as bad as it's going to get. I used to have a very good memory, and it's only been the last couple of years that it's noticeably declined. Memory is so much part of who you are, I sometimes feel I'm losing myself. On a lighter note, I can no longer sulk or be angry at anyone for long, as I soon forget what it was all about!

  • I have just been reading about Hepatic encephalopathy on Wikipedia.

    just wondering if its a form of that that we are suffering from connected to the liver and the toxins not being removed as they should be.

  • I too worry about my memory. Sometimes I can laugh it off but more often I just find it plain. embarrassing. I work in school and not only do I forget pupil's or even my working colleagues names, but I can look at one pupil and call them by another's name even to the point where I can call a boy by a girl's name. You may say I have a lot of names to remember, but no, my classes are a maximum of 10!!!

    Word retrieval is a problem too, general chit chat conversation generally seems ok apart from a few blips, but put me in a situation of having to talk about specific topics leaves me struggling to find words and having to substitute them for others that are not entirely correct,. This adds to stress and the problem just escalates. I have noticed that when I feel tired things get worse, the words don't come which adds to my stress and I end up feeling like a blithering idiot and wondering how others perceive me. Many times I become the "silent listener" when I am in company.

    I have mentioned my concerns to my GP and of course the answer seems to be an acceptance of it being a natural consequence of the aging process.

    Your thoughts????

  • i'm 38 and have been diagnosed almost three years and had symptoms a couple of years before diagnosis. I have problems with finding the correct word when holding a conversation, i forget dates, place names and to complete regular tasks. I have been banned from my own kitchen after many culinary disasters, the most recent being forgetting a pan of oil was on the heat and set fire to it, now thats bad but it was made worse when i did exactly the same thing with the second pan of oil only minutes after putting out the first disaster! I have struggled to remember which side of the road I am meant to drive... have never driven abroad so dont know why I would find that hard to do. it is one of the reasons (that and fatigue and utter itchiness) that has left me giving up work. have never really shared it with anyone in much detail as I have always put it down to the fatigue. Interesting topic of discussion.

  • I am 43. Always had excellent memory, with good academic background, bilingual, able to hold lots of knowledge, no need for diary, and able to remember conversations word for word. PBC diagnosed 3 years ago, but have probably had it longer. Memory problems really started about 3 a4 years ago, i now have to note down, make daily to do lists, use spell checker, feel generally rusty, have given up work, forget simple words, and forget regular appointments! Becoming unreliable in so mnay ways! Don't think it is just the tiredness that makes me forgetful.

  • I have always had a good memory but not since having this disease, i can tell when my LFT's are high because i cannot seem to say what i want to say because i can't think of the words or they come out of my mouth jumbled which is embarrassing especially when in meetings at work!

  • I am 42 years old. I was diagnosed in July, 2011 with PBC. The fatigue started 2 years ago along with other symptoms. I used to be a legal secretary and prided myself on my vocabulary as well as my memory for appointments and even word for word conversations. Now I carry an agenda just to keep track of simple appointments or things I need to get done during the day as I will completely forget. I struggle during conversations to find the correct word and have become stressed about even talking to people that don't know me well. I used to laugh it off and put it to getting older. Sometimes it is funny as I can watch the same movie a couple of months later and I have no recollection of watching it the first time! I don't believe that it is caused by fatigue as I have been feeling very well over the past couple of weeks and I know my blood levels are good right now too yet I am still struggling with my memory.

  • Another thing I have noticed is when typing on the keyboard, a lot of the time i type the right letters in the word but in the wrong order. just wondered if the people who say they use spell checker also found that was there problem. I guess a bit like dyslexia but have never had it before.

  • I also have this problem now but only in the past couple of years. Used to be fine and typed up assignments and letters with no problems. Is it PBC or perhpas a menopausal symptom?

  • I also just noticed this problem recently. It upsets me very much as my job depends on my typing ability!

  • My memory and concentration has gotten worse in the last couple of years although I was only diagnosed in May 2011. I am only 46. Just today I was multitasking and was making soup and also mince. I decided to cut up turnip to have with the mince but forgot and put it in the soup! I never have turnip in my soup. I forget a conversation I have just had minutes ago and lose track of my train of thought much easier and more frequently than I used to. I have always written things down and still do which I find helps.

    I agree with wendyh that it is difficult to determine what it due to the PBC or in may case the AIH as well, getting older, manopausal symptoms or just plain side effects of the drugs that I am onl

    Interesting subject though.

  • I was diagnosed with PBC in 2008,my memory has really deteriorated over the years.I find this very frustrating and worry as to how bad it is going to get.I forget the simplest of things,even the words that I want to say while in conversation!!I don't know if this is due to my age(51),the drugs that I am taking or the PBC,or maybe it is a combination of everything!

  • What was the question again?? ;0)

    Right, I'm 37, diagnosed 1999/2000. A symptomatic until August 2010. Memory & concentration been getting worse since then. I taught at a primary school until October 2010 when my headteacher observed me take a lesson. I had to refer to my plan & notes ALL the way through the lesson as I couldn't remember what I was doing next. When the children asked me a question I couldn't think of the answer (I've been teaching this age for 6yrs). My headteacher has observed me many times & so she knew this wasnt me. She also knew I'd been struggling with fatigue & pain, so she told me to take some time off to regain some energy. I never went back.

    I cannot remember names, and forget what I'm saying in the middle of a sentence. My husband has commented on the fact that I'm not mentally as quick as I was. Being a teacher meant I had to be very fast-thinking, and I knew I'd lost that. It's deteriorated further over the last year/18 months. I am not menopausal & cannot tolerate Ursodeoxycholic Acid. The only medications I'm on are codeine & amitriptyline for pain relief.

  • I really identify with this. I taught for 13 years full-time and a further 9years part-time. I got to a stage also where I also could not teach without copious notes. At the time I didn't know I had PBC and thought it was a symptom of stress. I now realise that, yes, I was feeling stress but that it was because I was so tired and unable to cope. Got really irritable too but not til I got home - poor hubby took the brunt of it! I used to be able to take lessons 'off the cuff' if required and did lots of supply cover at short notice.

    I gave up teaching in 2006 and went to study horticulture. After 3 years, I took up a position as a crop trials officer but job mainly manual handling so decided to go back to complete my final Honours year in September. Unfortunately, I have had to give this up after 1st semester as I am totally wiped out. Cannot concentrate or retain information. Doing Powerpoint presentations is worst. I need to completely script them as I forget what I'm going to say - this does not go down well with tutors who don't understand my problems. Hope to improve my energy levels and will hopefully return to finish in 2013.

    My GP seems very unconcerned about my PBC and although he accepts itching is down to my PBC, is unwilling to believe PBC is linked to my fatigue, concentration problems and muscle (mainly hip and foot) pain.

    Anyone else had this problem?

  • My memory is definitely affected. Lists rule me now. I forget things I have just been told, forget what I'm saying mid sentence. But the most horrible thing is when my brain 'freezes' and I completely forget what I am doing. It's very scary sometimes....

  • Saw the specialist today and discussed this with him. He said at the end stage it could be affected but he did not know that it could affect people before then. He wants me to have a brain scan to rule anything else out.

    i told him about this group and how quite a few of us had discovered we suffer with our memory and concentration. He found it very interesting and said they way they actually learnt about things was by listening to their patients and so much was unknown about PBC so there was much to learn.

    Just wondering if any of the researchers/doctors had acess to this site as it might help them.

  • Hi Robert -- first, i keep Forgetting to come to this site daily -- if not for your email reminders, i would never be here - i am now 54, and have many medical issues -- having read the 17 responses to your question, i am relating to every one of them - recently i made a left turn from a middle lane, which meant turning left IN Front of the left turn lane people! i had NO Clue i was doing it until i got honked at -- i completed the turn, pulled over and asked my husband what the heck did i just do??? - he doesn't notice these things as he is vision impaired and does not drive - i honestly can say that i don't KNOW why i did it, HOW i could have done it - i've been driving 24 years and am an excellently safe driver -- until recently --

  • it is so worrying isnt it. I do hope something can be done to reverse it rather than it getting worse.

  • meant to say that I have been referred to a neurologist to look into this to see if there may be some connection with the liver.

  • Hi, Im 49 years old. I have been diagonised with PBC for just over three years. I had a lung operation 6 years ago and when ever I mentioned my memory problems the doctor put it down to the anaesthetic I had and I was told it would wear off, but it didnt it got worse.

    I definitely suffer from memory problems and concentration problems. I always used to have a brilliant memory but now it is very bad. I forget what I am saying mid sentence. When Im cooking I forget to put ingredients in, I carry a diary and leave post it notes everywhere, and each morning I write a list of what I am meant to be doing so I dont forget to do something important. When I was working I was a bookkeeper but a cant do that any longer because I cant concentrate and and I just dont know what to do half the time!

  • Hi, I'm 60 and was diagnosed with PBC 2 years ago, although I've been having test and monitoring since 2001/2002, I was diagnosed with sarcoidosis in 1996, so it was thought that I had hepatic sarcoidosis, after taking large amounts of steroids, I was finally told I had PBC. my memory is atrocious, I was always very good at remembering things that mattered, I've always been very competent in my work which is HR/payroll, I could multitask along with the best of them, not any more I have to say, I can't remember thing, I have to put reminders on my email calendar or I wouldn't get my work done, like the rest of you I find my words dry up in conversation, can't remember names or directions, my husband told me I was like a goldfish! Cheeky begger, but on a serious note it is very worrying.

  • OMG, I have just read all these answers as I thought it was a new question and then got half way down it and came accross myself and realised that I had already sent in a reply! Just about says it all! Even my boss the other day, when I asked her a question, said that that was the 3rd time I had asked her the same question. Definately losing it.

    Pendemonium - Can I ask you why you are on Azathioprine for PBC? Is it because you cannot take Urso? I thought Azathioprine was to treat AIH?

    Robert - Your thoughts on this would be appreciated.

  • My memory has gotten worse in a few short years, I have to have list to follow. I even have to write my prayers, for my mind is so scattered! Recently I have left the water running. I cannot find words I want to use, when speaking to people. I can't determine if it is because of my meds, age or PBC!

  • I have been suffering with increasing fatigue, worsening each month. I work with my husband making wooden chairs. It's a dangerous occupation, and is very physically demanding. I decided that it isn't something I can see myself doing until retirement age, and that, as I do the computerised accounts for our business I should formally train to enhance my employment prospects. Before my treatment the fatigue made me feel incapable of thought. If I read 2 sentences I wouldn't be able to tell you what I'd read. I could work through examples and then fail to do exactly the same task immediately afterwards. Confusing, frustrating, demotivating. I am finding that Modafinil has given me my mental clarity for the time being. I must remember where I put those books...

  • At the age of 62 i was thinking maybe dementia was setting in but reading all of the stories on here and answering the questionaire sent by Addenbrooks hospital i am relieved.I think my family just laugh it off but the humiliation is awful

  • Think i meant allderhayes Hosp where they are doing research

  • Phew I can rule out dementia but has left me in floods of tears & suddenly everything seems so real and I feel very scared, the term knowledge is power may work in some instances(which I guess is pointless if our memory is bad)....the term ignorance is bliss seems more attractive at the moment :( Does anyone have problems with their long-term memory?...my sister has to constantly tell me tales form the past as I cannot remember anything :(

  • To be honest my long term memory seems not to be affected. But have no clue what I had for tea last night.

  • I am 38 and was diagnosed with PBC in 2008. In the past two months, I have noticed an increase in memory issues and concentration has been very difficult. I also type a completely different word than I mean to all the time. I have tried to open my garage door with the stereo on/off button several times, along with other things of that nature. If I'm in a group and too many people are speaking at once, I zone out because I feel like my brain can't handle it or process anything! It's very disconcerting.

  • My brain is like it is in a fog. One example: I was typing last Friday and I couldn't remember how to spell Friday. It took me 3 attempts. Today I was listening to some CD's and I didn't care for the song that was playing so I was going to listen to the next song but I couldn't remember how to do this.After trying to remember for about 5 minutes, I finally gave up and just hit the scan button, so for 10 minutes I listened to parts of each song because I couldn't remember how to stop the scanning. As far as when I am in a group of people and they all are talking, I do the same thing, I zone out and don't listen to anyone, I smile and nod alot and if able I go somewhere else where it is quieter. Do to my energy level being almost non-existent now, I am not in groups very often now. I prefer solitude and quietness.

  • WoW! I love, love, LOVE this forum!! I'm not going crazy!! I'm not losing it!! Yay!! LOL

    I have always had a fair to middlin' memory but in the last few months it has really gotten bad. I forget the simplist things and it's embarrasing if in the middle of a conversation.

    I am 70 years and was diagnosed with AIH/PBC overlap in Aug. of 2007 but truly believe that I had had at least the PBC since '99 or there abouts. We live in the States and for years we worked with different telephone companies across the country installing telephone equipment in the main phone buildings. Consequently it made it very difficult to be in one place long enough to be able to go thru all the app'ts/tests that were necessary to make a diagnosis. After

    9-11 we both lost our jobs and being we weren't old enough for medicare we had no medical insurance - which meant no Drs.

    For 3years I tried to work as a home health aide but I tired so easily that I finally had to quit. I applied for and got Social Security Disability. Made the rounds of Drs. who didn't have a clue as to why my LFTs were high and my ANA was off the chart. In '05 (I think) I was dx with PBC and the Dr. (a Gastroenterologist/Hepatologist Professor at the University Hosp.)wanted me to take Urso but the way that he described the medicine it sounded like Bear PooPoo and I wasn't about to put that in my body. LOL In '07 my husband got a job on a ranch in central Oregon and I made contact with 2 wonderful Drs., of which one was a Gastro/Hep. (and happened to know the Prof.lol). Diagnosis was made in a week and the rest is history.

    Memory - long term isn't too bad. Short-term, and specifics, is pretty crummy. Wasn't this supposed to be a short answer to a simple question.? LOL Sorry, didn't mean to give you my life's history but it does seem that the last nearly 15yrs have been tied up in one way or another with these diseases. -:(

    PBC Robert - Thank you all for this site. It has helped many of us in many ways.

    I'm done now. LOL

  • Hi, I think my memory problems started quite soon after getting pbc. It has got worse over the years but pretty much immediately I found it difficult to remember even a few things I have to make lists to help me remember (even just 2 or 3 things from the shop) and whats probably worse is the lack of concentration. My brain too is like its in a fog just cant think straight and cant handle many things going on at once.

    I am so glad to hear its not only me !

  • my memory is the same, after being a chef for many many years and never having to use a recipe book because once i used a recipe it seemed to get logged into my brain. but now i cant even remember if ive done or said something or that i was mearly thinking it. my husband no longer lets me in the kitchen.haha

  • I am so glad to have read this - not glad that you all have had issues with memory though.

    I have never been asked about brain/ memory issues - even though i have raised it at every single appointment with a medical professional. If the question is never asked, it is unlikely that they will ever come up with any evidence that this is a problem.

    I started noticing problems with memory about this time last year long before i ever realised that I was ill.

    I was forgetting so much stuff but i put it down to working too many hours and studying part time. In Sept last year, I handed a piece of work in for my post graduate course. It had been a real challenge which was strange because it was a topic that I should have flown through. But I couldn't process the information that I was reading, I couldn't organise or write my reports in a coherent way, I forgot everything that i knew about the whole subject. I passed the assignment but with a full 20% lower mark than my previous lowest score on a final piece of work.

    In work, I was forgetting crucial conversations with staff and service users, missing important information, having great difficulty keeping up at meetings, forgetting to do important pieces of work or struggling to complete easy pieces of work. I was snappy and irritable. I was a total liability.

    Then the tiredness started. Like someone else above, I started to think that I was developing alzheimers. Then about 3 months after i first noticed the memory and concentration problems, I went to the doc because I was so scared.

    And yesterday, about 9 months after my first appointment - i got a diagnosis of pbc. I have just started on ursofalk and i am hoping that it will have a positive effect on these symptoms. I think at the moment i can handle every other symptom that I have except the tiredness and brain problems. I feel as if I woke up one morning and all my intellect was gone. I was never going to win mastermind but i was at the last module of an MSc so I was never thick either At the moment, I have no chance of completing the MSc because I can't read properly.

    The traditional tests for intellectual functioning seem to focus on very basic tasks and don't seem to cover any loss of capacity. So to my mind, they are simply testing if you currently have the most basic skills while taking no account of the extent to which your mental / intellectual functions have deteriorated. I could probably do very basic tasks even now but I know without any test that my mind has deteriorated to a huge degree over a very short period of time. There is no reason other than this liver condition that I can see for this.

  • ps.. I am nearly 50, female,i have been 'not well' for a year and have had elevated lfts since my first docs appointment in January.

  • I was diagnosed with pbc in March 2014. However for a couple of years I have noticed that whilst I know the word I want to use, I just cannot think of it. Given a couple of minutes, the word will come. I do crosswords and often have to return to the puzzle for this reason. I am 67 years

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