Memory loss

My son told me this morning that he doesn’t remember some parts of yesterday. He said he’s had “blackouts” on and off since yesterday morning. He’s also complaining about his right side and back hurting. His heptoogist office was not open yet, the on call dr is a general practitioner, he said to go to the emergency room. We are here and waiting, has anyone else experienced this?

My first thought is medications, Michelle. Which meds is he on? Is there a possibility of an incorrect dosage?

Hi Michelle-

Yes, my son had similar experiences. This was fairly soon after his diagnosis and he was on prednisone. He was "spacing out" - doing things like getting on the subway and ending up at the end of the line (like an hour later) and having no memory of how he got there.

They took it very seriously - brain scan, neurologist consult, opthamologist consult, etc, and it all came to nothing. I guess there is a type of seizure that can look like this. These symptoms went away as the dose decreased and he hasn't had any episodes in over a year.

I hope they figure out what's going on FAST, or at least rule out any serious problems!

Hi Michelle

I suffer from short term memory loss when I don't know sometimes where I am going or what I was going to do. It comes and goes.

He has been on ursodiol 500 mg twice a day since his diagnosis in 2012. He was just diagnosed with Crohns 3 weeks ago and put on apriso (4 pill in the am) and uceris one daily. The er dr just put him on a clear liquid diet until Wednesday when he goes to hepatologist. Also told us his cr scan showed changes in his liver and gallbladder but didn’t explain what. I think he wants the heptololgist to explain. I’m glad to hear that your son no longer has this symptom mom to psc teen it is very scary. The dr today didn’t seem very concerned with it. I will definitely be asking on Wednesday. Thank you all for your help and support

Michelle --

I had that experience. When I was properly diagnosed with PSC/AIH, my wife had been out of town on a trip with her sister. When she returned and started asking the basic questions, how was your day, what did you do, I found that I couldn't account for much of the last 48 hours. She got alarmed and took me to the ER. Turned out I had been having seizures as well as hepatic encephalopathy, resulting from liver failure. It is scary, please let us know how it turns out.


This is very timely. I, too am going through some memory loss. As others have mentioned, it certainly could be meds, but it makes me wonder if my PSC has progressed to the Hepatic Encephalopathy stage - American Liver Foundation


Thank you, Paul. That link is quite useful.

As I shared above, the first HE episode I had was extreme: I was slipping in and out of consciousness, and when conscious I certainly had no idea of what time it was much less what day (I remember coming to, looking at the clock, and having no notion of what it was saying). Because that was my only experience I assumed that HE was always that way.

Well, recently I've been experiencing less extreme but still scary moments -- I've lived in this neighborhood for 15 years, and this city for almost 30, and several times I have found myself driving or walking and momentarily having no idea where I was, a half block from home, or right around the corner from our regular grocery store. Pretty often I have to think hard about simple addition -- what's 8 plus 6? And my memory is terrible, it has been for a few years.

I recently had a conversation with a friend of mine who had a transplant about 10 years ago. In the period leading up to his transplant he educated himself extensively. I was puzzled about why I seemed to be having these and other mental impairments, despite my liver numbers always being normal lately. He cited his favorite statistic, something along the lines that the liver has 400 separate functions in the body. He said that if the liver isn't doing any of these functions right, then you can experience mental and other issues.

The LFTs that my Dr orders only cover a small handful of markers, and when these are normal I feel frustrated: "Then why do I feel so crummy? Why am I confused? etc." But it helps me to keep in mind this idea. The Dr is measuring the things that are most critical for him to know, not everything that might be affecting how clearly I am thinking.

Thank you Bob. It is very frustrating as a parent to be told his numbers are good but to watch how bad he feels. I feel so helpless. I’m sorry for anyone that has to go through this disease or anyone that has a family member going throught it.