'Wednesday Word"

[DonnaBoll]

Since my question yesterday was concerning 'brain fog', I thought my word for today should be

encephalopathy - here are specifics about the word

This is a blanket term referring to any brain dysfunction. It can commonly be called 'brain fog'.

However, encephalopathy occurs in advanced liver disease when the liver can no longer filter toxic byproducts of metabolism.

It ranges from minor changes in memory, concentration, personality or sleep pattern thru coma.

Encephalopathy is VERY rare in PBC.

There is a difference between this (in PBC) and more common mild cognitive symptoms.These more mild occurrences can be present at ANY stage of PBC.

If you feel you are experiencing any form of these changes, it is helpful to have a conversation with those who are around you . They may notice changes that may help you be even more aware of this. Telling your doctor is important as well.

[Turquoise2075]

Thanks for the info Donna. My most worrying symptom since developing PBC has been significant cognitive confusion. I am only in the earlier stages of the disease but it’s been extremely debilitating at times. I’ve become so disoriented at times I’ve sat in my car not sure how to get to a place I’ve been to before. I go to look at Google Maps on my phone but find I’m just staring at my phone with an inability to figure out what I was looking for again. Some days I have profoundly struggled to make a cup of tea. One symptom has been losing the ability to visually recognise objects which has come over me quite suddenly at times. I had a very marked improvement after microbiome testing and starting on supplements tailored for PBC. Then months later I had another decline, then a significant improvement again after starting obeticholic acid which is known to restore the blood-brain barrier in PBC. I’ve mostly maintained that improvement but my cognition is still not what it used to be. I’ve had debilitating fatigue as well but I have found the cognitive issues the most disturbing. I’m very grateful the obeticholic acid has restored quite a bit of cognitive function.

[DonnaBoll Administrator in reply to Turquoise2075]

Thanks for sharing all of this with us. Do you feel with so many symptoms that you need to be testing for cognitive impairement? Might give you some insight.. and peace of mind as well. Sorry, if I've asked before, but do you live in the States?

[Turquoise2075 in reply to DonnaBoll]

Thanks Donna. I’m in Australia. The first liver specialist I saw did a CT scan which showed no lesions which is what he was looking for. The second liver specialist suggested seeing a neurologist and to get a referral from my GP. The GP wrote one but I was advised by that neurologist’s office they would not see me for that issue. I went back and saw a different GP at the same practice. He did another referral to another neurologist I’d researched but he stripped out the details about cognitive issues and PBC, so that neurologist would not see me either as he’s already heavily booked up and had so little info provided as to why I was referred. By this time I was improving on obeticholic acid so the liver specialist said don’t worry about it anymore. I feel like an fMRI may have been helpful more than a CT scan but they don’t often refer to have those done because of the expense. So I feel a bit lost with it. I’m not sure much can be done to help medically anyway and it is what I can do myself that makes the difference - eating healthy, exercise, minimising stress etc. But if I worsen significantly again I might try to push for getting cognitive testing. I’m finding you really have to push to get help at times. Thank you and I hope you have a good trip to Scotland which I read about on another thread.

[DonnaBoll Administrator in reply to Turquoise2075]

What an awful journey you had to travel and then still no testing done..... there are medications here in the States for brain fog. (lactulose) I agree that you should continue to monitor any increase in symptoms. Your family should be aware as well so they can be aware of any changes too. Don't give up trying to get that cognitive assessment. All to often we have to advocate for ourselves ---over and over again.

[Turquoise2075 in reply to DonnaBoll]

Thank you kindly Donna 🙏 Yes, I will monitor symptoms and if it gets worse again I’ll insist the GP refer me again. That’s good to know about lactulose. I’ll have a read about that. I live on my own now so there’s no one to really monitor how I’m going so I have to just be aware myself if something is up. I hope you are enjoying your time in Scotland and learning many interesting things about PBC. Many thanks again.