Interesting anecdote on brain fog

[CeeCee101]

Was seeing my rheumatologist checking to see if I have Sjogren’s overlap and just some general discussion about PBC symtoms. As an aside she mentioned they just diagnosed a man who came in deeply fearful he had early onset dementia due to brain fog. Turns out he has PBC. So again, just a reminder to talk to your doctors, don’t Google down a rabbit hole, and come here and to the Foundation for help. BTW kudos to the Foundation for responding to the demand from the US patients. Been using the Foundation for years but never could get up at 5 am for some of the chats, etc. Cheers.

[DebatDG9]

That’s interesting! I am now caring for my husband who was diagnosed with Alzheimer’s a few years ago. I used to be able to be reviewing and planning all manner of things in my head whilst doing jobs but now unless my full attention is focused on what I’m doing even the simplest of tasks are in danger of going awry! I was beginning to fear that I may be developing 1st signs of dementia and if that’s the case we’re both stuffed!

[Turquoise2075]

Thanks for your post CeeCee. Brain fog has been a strong symptom at times and I too have had moments of fearing early onset dementia. It had improved for quite a while then worsened a lot in May, despite my liver readings having normalised. My liver specialist put me on obeticholic acid and from 3 weeks after that I started to greatly improve with mental function. They’ve done studies with mice where obeticholic acid has restored neurological function and they believe it restores the blood-brain barrier. While I’m still a little foggy at times I’m hugely better than I was. The worst thing was the visual recognition part of my brain didn’t seem to work anymore. Walking in the supermarket aisles I found it extremely hard to process what I was looking at. I actually had trouble grasping what things were let alone remembering what I was looking for. That’s gone, thank goodness. I don’t know if anyone else with PBC has ever had anything like that?

[CeeCee101 in reply to Turquoise2075]

That’s very interesting, did your doctor add the OA onto your URSO regimen? My brain fog is helped by lists—list before store, list before errands, lists before doc appointment, etc. But sometimes it’s frustrating.

[Turquoise2075]

Hi CeeCee, No he got me to come off Urso all together. However, I have read that some people are put on both meds which are thought to be helpful in combination for some people.

In my case I was not responding to Urso anyway. It was supplements and dietary changes that corrected my liver readings and kept them normal. But quite severe cognitive symptoms came back after a break from them. This suggests the mechanism that affects cognition can still happen even when liver readings have normalised. Research has shown cognitive symptoms and fatigue can be quite bad for some people even in early stage PBC and where there is minimal liver damage.

I was writing lists and then it got so bad I couldn’t even write a list. Thankfully I am doing a lot better. I enjoy photography and I feel that is helping the part of my brain where even the capacity to visually recognise things was impaired. So trying to do everything now that feels like it helps my brain, including minimising stress and doing things I enjoy that help my brain make connections and stay neurologically healthy.