Just lately my concentration and memory have gone from bad to really bad.
I have made an appointment to see my GP and hope to have my ammonia levels tested as I have read that they can become high if the liver is not functioning properly and cause poor concentration etc. Has anyone else got this problem?34
oh yes indeed!! i really suffer remembering anything. i have 2 notepads now one upstairs one down to jot stuff on so i remember, this was a tip from someone on facebook pbcers uk. seems this is a regular thing with PBC im afraid.
Yes, definately! I've always loved reading novels, but my memory is so bad, I'm having trouble remembering storylines. Am worried it's getting so bad, I might have to stop working. Sometimes I forget words, or what I was saying half way through a sentance. I'm only 41! Didn't know about ammonia levels though...
I'm glad other people are saying the same.
I work full time still but find it harder each day !
I find I am writing things down all the time I have little post it notes all over my computer.
With regards forgetting words that's horrible I find when I'm on the telephone I don't hear everything and I am so busy trying to remember what I have to say I lose the thread of conversation.
My husband says I have the memory of a goldfish at the moment!
In work I have to remember so many password and as for pin numbers for credit debit cards!!!!
If anyone has any tips I'm all ears
My two most used words seem to be thingy and whotsit. Mind you the dog looked at me gone out when I called him thingy the other day. The kids are used to me getting their names wrong now. I have to write things down before making a phone call and always take a list to the dr`s. The kids all help out by writing things in my diary as long as I remember to look.
Cannot multi-task either now. Have to do one thing at once or it all goes wrong. Can be sat watching tv and have no idea what happened at the end of the programme. I have laughed it off so far but am getting quite worried about it now.
I'm the same Zipitydoo. I start conversations then can't remember what I was trying to say. I use the wrong words all the time. The other day I typed, 'outline' instead of 'audio' - they're not even similar! This happens a lot. Last weekend my wee nephew, Matthew, got called, 'Martin', 'Mark' and 'Mike' - oh well, at least I got the 'M' right! haha. I take a list to my GP and also my Consultants. As I attend so many hospitals I keep my medication list up-to-date, on my pc because they change from-time-to-time so its easier to amend and print than to try to remember, cos I wouldn't! I'm still laughing it off because there's nothing I can do to stop it. (
There's a comfort in the knowledge that you're not the only one who suddenly opens your mouth, only to find that your brain can't retreive the word you know is lurking around in there. After ending your conversation and several minutes of looking vacant, it suddenly appears....
I thought it was just old age, even though I am only 51, I did not put it down having anything to do with my PBC, sometimes I can not remenber what I did yesterday and I forget that I have put things under the grill sometimes until I smell the burning.
All these answers i can relate to!!!! scary stuff. I was worried that i had dementia (Nan had it, horrible disease) but it seems that it is part of PBC im afraid to say. I'm also part of the pbcersuk on facebook also PBC foundation and PBCers also on facebook. here you can chat, moan or leave tips to others like us that have PBC. I have found it really helpful to talk to people who are or have been going thro the same things.
The tip i have for memory is like it was said above NOTEPADS. I have them everywhere!!
I'm so glad this forum has been set up makes you feel that your not going mad !
It's nice to hear other people are going thru the sane as you.
I will have such a list when I go for my next appointment!
As long as I remember to take my note pad
Thank you everyone xxxxx
I will let you all know how I go on regarding the ammonia level. I have read that some people in the USA take lactalose to reduce the ammonia level as directed by their GP/liver doctors. Then their concentration/memory improves. Reading it did make me wonder if people with dementia would benefit from it and whether they had actually had their levels checked.
Guess I am just hoping there is an answer to this and I can get part of the old me back.
Friday night I picked my son up from the station to bring him home. I actually drove past my road. no idea why....we have lived here for 8 years and never done it before.
I to have memory loss and forget sometimes mid flow as what I was saying. I sometimes put it down to not sleeping well but always tired.
Saw the GP today. An ammonia test is not apparently standard practice so it dosent look like I will be getting one unless its requested by a specialist. Hope anyone else requesting one has more luck.
I asked my consultant if memory loss was down to ammonia and he said i dont think so your liver would have to be in very poor shape for that to happen! Beginning to think i know more than him! my aches and pains are NOT PBC related. Think i should get him to read these sites about REAL people with PBC and then he might understand a little more.
My consultant says my memory is nothing to do with Ammonia as your liver would have to be really bad for that to happen! he also says that my aches and pains are not PBC related either. Think i should get him to look at these sites and look at REAL people who live with this Disease daily. Grrr so frustrating!!
The cognitive problems are nothing to do with levels in blood test. As with all the other lovely symptoms of PBC, the amount we suffer does not correlate to the amount of enzymes/toxins in our blood. The constant fatigue, itching, pain, memory & concentration problems are all part of living with PBC. Oh what fun we have, eh??
Hi Debi P. I think it's me that gave you the tip of the 2 notepads!!!
Perhaps its something that is more looked into in the USA than here.
What a relief to hear that others are having memory problems too. I thought I was losing my mind. I am usually so good at keeping track of everything going on in a busy home with kids but find myself forgetting appointments. I am going to start carrying a daytimer and hope that that will help. I also have trouble remembering words while speaking and find it very frustrating.
I was reading all of your comments and thoughts on memory loss and it appears that most of us are probably going through the menopause and I've just bought a book which details a list of symptoms including memory loss and poor concentration amongst others including aches and pains and fatigue. I'm definitely struggling with all of these symptoms on and off and think they may be due to the menopause rather than PBC. I suppose only time will tell.
Robert, does the foundation know why memory loss is attributed to PBC and whether supplements such as ginkgo, ginseng or fish oils can help. What percentage of people with PBC suffer this side effect?
My hepdoc at Addenbrookes has said that cognitive problems can be a symptom of PBC.
I had a total hysterectomy last yr (age 35) & am on HRT so definitely NOT a menopausal thing. A x
Fatigue is a well known symptom of PBC and as many of us know, poor memory and concentration go hand in hand with fatigue.
My concentration and memory are definitely worse when fatigue s severe.
The PBC foundation have published recently articles by Dr George mells I believe about energy conservation and rationing. It really works for me.
I exercise regularly too which definitely helps but inbetween I respect my energy levels.
There are times when i do not drive because I feel like I wouldnt be afe to do so. There are times when I dont even go out side my hosue as I am too tired. At these times my memory is generally bad too.
I never ever stop trying tho. I read as much as I can... I try to keep my brain busy as I am convinced that the brain works in a 'use it or lose it' capacity.
Hope you get sme answers to your questions or find a way of living that works well for you. x
I agree with the above as when I am having bad fatigue days nothing functions, either brain or body, and even speaking is an effort. As to memory and concentration both are zero. I do try to do word puzzles etc to try to stimulate my mind.
Other days both my memory and concentration fluctuate and I also excercise as often as possible and find this really helps. I have found myself not being sure which side of the road to turn into when driving and rely on instinct.
i am trying to cook a roast dinner just now and have just spent a couple of minutes staring at the timer and trying to work it out. I think these happenings are so much part of my life that I dont really think about them.
Argh i hate it when the computer freezes up after i've typed a reply --- Anyway, i am thrilled to know i am not alone in all of this. - and i have just -- this hour - found this site, so i have alot to read -- if i can REMEMBER to come Back here and do so. -- lolol -- nite all, thank you for being like me. ----- dolores
Welcome Delores. I was in your beautiful home town a couple of years ago for Christmas. I could not believe how cold it was. I have been on the site a couple of weeks now and it is a great source of comfort to know that you are not alone. Isn't technology great.
Well, here it is 4 months since ya'll had the above discussion, but since I have just recently joined, I find it interesting to go back thru the questions and comments. -
I am sooooo glad that I am not the only one with memory problems. I was about to chalk it up to my age (70). Just within the last month I have started having problems remembering "familiar" things - things that I should have no trouble with and I must say that it is not only embarassing but a bit scarry. Now granted, my age may have a bit to do with this - but I think I'll give the PBC some of the "credit" also. My! there is so much to this disease! - Geri Ann
I am seeing the neurologist about this next Thursday so will update after my appointment. The heppatologist recomended that I see one as he dosent know if it is down to the liver so wants to check for other things to be on the safe side. I have been waiting since Jan for the appointment so hope to get some answers/tests and hopefully get it sorted out. I am 50 and hate having a brain that dosent work.
One strange thing I have noticed lately...is when I am driving and come to a bend...I have to lean over to the side like I did years ago when I rode my motor bike. I dont feel safe going round them unless I really slow the car down. I used to love driving but now seem to be becoming paranoid about it.
Ascension symptoms,you are evolving,we are changing from carbon based DNA to crystalline,we are stepping out of the illusion of the matrix,time is quickening as it too is an illusion! Trust the process,everyone is going through it at their own individual pace,drink plenty of water and rest as much as possible avoid anything that ‘programs’ you TV etc. listen to your guides,they are here in abundance to assist,go out in nature and live consciously and connected,feel your way through this,it will get a bit bumpy,but we are not alone!....lol no I don’t do drugs or drink! Blessings Kerrie
Fatigue and nausea- good days and bad days?
Is sugar bad for pbc?
Bad nausea 
ESA tribunal good news bad news
