Still confused about pbc?and memory problem . - PBC Foundation

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Still confused about pbc?and memory problem .

kashik profile image
12 Replies

I was speaking to my neurologist about brain fog, short memory issues, in some way slite confusion in conection to my pbc very early detection. I always feel like something is "swimming" in my brain. As per my doc she said there's is no connection one to another.

1.What do you think is there conection or not??

2. Which blood test give 100% pbc diagnosis??

How soon you expeance memory problem/confusion in pbc patients??

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kashik profile image
kashik
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12 Replies
Jowen profile image
Jowen

Hi kashik, I certainly had memory problems (still have but not as bad) when I was diagnosed. Not sure why doctors are so fond of saying that obvious symptoms aren't symptoms... My doc keeps saying that my iron level problem is nothing to do with PBC. But I'm quite sure it is... It started as I was diagnosed and it's persistent.

I experience all the things you mention but I can handle them and my other symptoms better now that I'm used to the disease. It's sad to forget so much but it's made me a more relaxed person. I forget all life's little miseries too.

Memory problems are a part of "mild" PBC too, for sure!

Best wishes,

J

Sun65 profile image
Sun65

I too have memory problems. I also believe it’s from PBC.

EileenUSA profile image
EileenUSA

ncbi.nlm.nih.gov/m/pubmed/1...

Hi,

There are legitimate medical studies out there regarding cognitive issues and PBC. Above link is an example. It IS frustrating when we mention symptoms to drs who tell us “oh.. really?”

Of course not every symptom is PBC... but

fatigue, itching, brain fog are connected to autoimmune-PBC.

kashik profile image
kashik in reply toEileenUSA

yes -agree - sometimes I have a symptoms - cant explain with my own words.

Could you please provide me with the medical studies ...this would help me a lot. tx

EileenUSA profile image
EileenUSA in reply tokashik

ncbi.nlm.nih.gov/m/pubmed/1...

Hi- if you click on this link it takes you to a study that looks at cognitive impairment in PBC.

recipes profile image
recipes in reply toEileenUSA

I think so also because I have fatigue, itching, brain fog maybe all of these systems will help us not to worry as much I don't think I am as alert as I use to be.

Cstar1079 profile image
Cstar1079

I also have “brain fog” which is a common symptom of most autoimmune diseases. It could also be unfortunately that there is something else going on. I know that in my research I have come across a lot of things that say... “if you have one autoimmune disease you’re most likely to have more”. They usually don’t just come as one it’s a myriad of things. I have been told I have fibromyalgia as well as Chronic Fatigue Syndrome. However sometimes I feel like they just tell you anything because they just don’t know. I’ve been reading lately about the Vagus Nerve and how it’s been linked to a lot of autoimmune diseases as well as many other things. I’m sorry you’re dealing with all of this and hope any of this helps.

Dinasmom profile image
Dinasmom

I have four autoimmune diseases, including PBC, and I think stress is a very important, and often overlooked part of disease. Not just the development of AI diseases, but also of flare-ups. Our immune system goes into overdrive when we are anxious and stressed. As we focus on the treatment of our pain, mental fog, and the disease itself, let's not forget the management of stress. I'm practically symptom free when I am at peace. Good luck!

lilygrower profile image
lilygrower

Thank you for this reminder about "managing" stress.

Stub007 profile image
Stub007

(I am in the USA.) I was diagnosed with Stage 3 PBC a year ago (age 81), and especially in 2020 I notice an uptick in short term memory loss and increased difficulty in focusing for long periods as in the past. No question about it in my case. Good luck!

KLynnRoy profile image
KLynnRoy

I have experienced confusion at times but typically it’s happened during the debilitating fatigue. My body has gotten so exhausted to the point I didn’t know what I was doing or why. Mental fatigue accompanies physical fatigue. And the only thing that gives a 100% diagnosis is a biopsy which is usually only performed after blood tests are indicative of pbc. Hope this helps and God bless!

KevinHall10_ profile image
KevinHall10_

Mine was a blood test called antimitochondria .

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