Memory where's it gone !!: Having been... - PBC Foundation

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Memory where's it gone !!

Anneeileen1 profile image
10 Replies

Having been diagnosed PBC for about 2years and for the past 6months my brain doesn't seem to be working ! I go to say something and the wrong words come out or I can't remember what I was saying also l'm getting very confused and panicky if I go somewhere new (holiday ) lve heard of something called brain fug ? Does anyone know what I'm getting at ?? Many thanks

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Anneeileen1 profile image
Anneeileen1
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gwillistexas profile image
gwillistexas

Oh yes. I suppose I have a little brain fog. Mostly in the afternoon.

Anneeileen1 profile image
Anneeileen1 in reply togwillistexas

Thanks for replying . I always need a sleep in the afternoon x

Shulsey profile image
Shulsey

There are a lot of us who go through this. It's called hepatic encephalopathy. It is common with those of us who are in advanced stages of liver disease. Some, I've notice from this site, have it In the earlier stages as well. In my case, because we are all different it seems, I am at stage 4 PBC with stage F3-F4 cirrhosis & grade 2 varicies. Due to my liver being incapable of filtering out certain toxins in my blood like ammonia it gunks up the neurons of my brain causing "brain fog". It is always worse when I become extremely stressed or overly tired & exhausted. My heptologist prescribed Xifaxan for this. I take it in the morning & before bed. It helps a lot, but I still have the effects of the brain fog when Im extremely tired, it just isn't as bad as it was because the medication. Hope this helps.

Stay strong❣️

Shannon

Anneeileen1 profile image
Anneeileen1 in reply toShulsey

Thanks for replying. I think I'm only stage 1-2 but have fatigue sore dry eyes and memory loss x

gwillistexas profile image
gwillistexas in reply toAnneeileen1

I am low end F2. Mild to moderate. I've had dry eyes since I was 40. I'm 63.

June9961 profile image
June9961

Hi,. The past 5 years I have been experiencing 'brain fog'. It most usually strikes when I am tired or a little stressed to the point of not even knowing my name. I don't know what stage I am at and quite frankly don't want to know. However, I can say the 'brain fog' is getting worse.

in reply toJune9961

hi i suffer terrible from brain fog i also have pbc and fibromyalgia i had never hearf of brajn fog thru pbc thought mine was off my fibromyalgia coz it does that now im even more confused lol

PCBnPBC profile image
PCBnPBC

H.E. or Hepatic Encephalopathy like so many things in life runs a full gamut of degrees.

I had Chronic H.E. for a year before my transplant. I was on a bad day quite "mad" it had the effect of taking away all my inhibitions..... I was rather dangerous in social situations.

on less bad days I was so fogged I could not remember my own (land) line telephone number of 17 years, my neighbours names, I could not read 5 words and repeat them, I lost the ability to figure out how to answer my mobile. At this point my liver was totally shot (PBC) and I was high on the list. I handed in my driving license!!. Brain fog is I guess the precursor to this, but NOT everyone gets either brain fog or chronic H.E.

Refraxomin helped me a little.

lactulose that purges your gut daily whilst not pleasant, is required to help reduce this.

Keep strong. it is good to take time to relax where you can.

littysgirl profile image
littysgirl

I was diagnosed two years ago and seem to be a F1 or F2. It took a year of testing and doctors to come to that diagnosis. I suspect I've had this much longer because my liver tests were on the high side for many years but not high enough to cause alarm until one blood test where they jumped to crazy high levels - to this day, no one knows why. I've had dry eyes for about ten years. I suspect that maybe how long I've had a dry mouth and dry eyes is really how long I've had the disease.

Brain fog - I don't think I have that but my daughter might disagree with me. How old are you? I DEFINITELY had brain fog when I was going through menopause. I didn't think I was going to survive that but these days, I think I'm ok.

Anneeileen1 profile image
Anneeileen1

Thanks everyone for your replys .after a blood test I've been given folic acid as this was very low and dr thinks it may help memory problems xxthankyou

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