PBC Foundation

Forgetful

I have had lots of brain fog. Tonight within about 5 min., I asked my husband what movie are we watching. This scares me because its getting worse. Lots of things , i just can't remember, then there are times i suprise myself and can remember old actress name, while watching tv. Does anyone else get this? I am 62 yrs. Old but i don't think it is dementia. Just scared.

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Just in stage 2, so i don't think it the amonia levels???

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If you read the article that Diane sent although it’s very complicated . It mentions excess manganese I n the brain which causes damage. I’m not sure I am going to get my Professor s opinin on the study .

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Yes, I have brain fog pretty badly. It is frightening as I can’t decipher if it is Walsh onset of dementia symptoms amore related to PBC. I am only 46.

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If this is a new symptom you should get checked out by your doctors, i think with PBC we are in danger of putting all our symptoms in the one basket so to speak. When there could be another logical explanation for it I find I get forgetful when Iam over tired the next morning Iam fine again.

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I agree eith you Candy I think some of it is down to other things for some of us

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I'm 50 this month, happens alot to me and it scares the crap outta me.

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Hi! KevinHall10

It might be useful if I gave my experience of what you call brain fog, but it is important to remember PBC can affects sufferers differently and there could be other explanation for what you say. At the end of the day we have to rely on the specialists.

I was diagnosed with PBC in 2002,. My liver got slowly worse and led to a transplant in 2014 and in the later stages of the illness the brain fog got worse and worse. In fact in the last year prior to transplant I needed the help of my family to function properly.

I was told by my consultant the reason for my confusion was because the liver was not functioning correctly and not removing the toxins from the blood. This explanation seemed logical to me now.Thankfully I'm ok now, no brain fog. I am 72yrs.

This might help you but we are all different.

Best of luck in the future!

Allotment

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Thank you.. for the passed 4 days , i have been pushing my self to do things, well today it has hit me. I call them episodes. I hate them, because i am usless. Just to darn tired to do anything. At least i know, hopefully i will feel better if i just rest . I get going on doing too much, then have to pay for it.

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Thank you alotment. I was dx in 2016, how ever my ama test was not good in 2011, just wasn't caught by previous dr. I personally think ive had this alot longer, because looking back i have been sick a long time. Anyway, in stage 2 now.. kind of worriedbecause i was told in 2016 i was in stage 1, then this year a specialist in Denver read the same slides from the liver biopsy in 2015 and said it is stage 2. Lately, I have been leary, because of the brain thoughts. I have been worried and bought me some vitamin that may help. Thanks again

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That happens lots of people when they get older sometimes a name will escape me wouldnt worry about it

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Think it comes with age i am 60 and sometimes forget a name etc i dont worry about it

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I agree eith you x

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I was recently diagnosed with stage 1 PBC but i started suffering from brain fog and confusion about 3 years ago and it gradually was getting worse. I work as a data analyst and usually around 2-3 PM I was useless and by 5-6 PM I struggled to recall things like my phone number, address, would stop talking mid sentence because i would completely forget what I was talking about and couldn’t recall or remember what i was going to say, was getting lost on the way home from work, etc. I am 44.

One really strange thing I noticed was anytime I cried my head was so clear after?? I still find that odd but to this day it’s the same.

I was terrified and convinced i had early onset dementia. I started taking medication for ADD. That at least kept me from losing my job but still by 5’oclock I turned into a blithering idiot again. I was terrified of late afternoon meetings!

Since being diagnosed I have cut gluten out of my diet. This was a huge help for me. I also have MTHFR and HP2 Polymorphism. I am sure that plays a role in all of this. I shouldn’t have been eating gluten anyway.

I also am more active now. I try to walk, ride my bike or do some physical activity to help me sleep at night. I try to sweat as much as possible.

I was also taking something to help me sleep. I can’t do that now but it helps so much to go into a deep sleep. Now I take steps to make sure I am extremely sleepy when my head hits the pillow at night.

It’s better now. I am back to just having normal ‘mom brain’ where I can’t find my car keys.

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I spoke to my Gastro today and he wants to do an endoscopy just to make sure I have no varices. He said better to be safe than sorry, as there are no symptoms other than brain fog and confusion from varices. I found this rather interesting after reading this post. What are your thoughts?

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