korsakoff

[Diamondbabe]

my husband was diagnosed in June 2020 with alcohol related brain damage and alcohol related liver desease in May this year.

it would be lovely to speak with people who understand these conditions and share experiences.

[Richard-Allen]

This maybe a little out of my depth and I wouldn't want to say or advice anything that might be wrong or untrue. I have just emailed neurologist friend down are the UCL about Wernicke–Korsakoff syndrome. So I'll not advise anything at this stage.

This neurologist specialises in HE research so I'll hopefully reply again once I've heard back from her.

Good Luck

Richard

[Diamondbabe in reply to Richard-Allen]

thank you

[Porcupine_Tree]

HI, I would highly recommend the BLT Web site in the first instance. They offer several forums that are via Zoom and cover most topics about Liver. Disease.

However the main advantage is that you get to meet lovely people who share your experiences.For example today there is a Pre Post Transplant which is moderated by one of the BLzT professionals

I thoroughly recommend you investigate this.

Good luck

[lonmallin50]

i got a de compensated liver disease is it HE that your husband got with brain i had it and started to collapse all the time even after 2 pints dont drink at all now been off it for 8 months is your husband still drinking

[Diamondbabe in reply to lonmallin50]

morning. Yes that is like korsakoff. My husband passes out . After tests they said its called vesal vegal. He still drinks over 20 bottles of strong beer each day. How do you know I'd your liver is comp or decomp?

[lonmallin50 in reply to Diamondbabe]

decomp is when you show signs of your liver damage like swelling of the legs or stomach or yellowing of the skin and eyes comp is having it with no signs at but still alot of damage is done, drinking that much it wont be long before he gets de comp which most of the time it is to late for the liver to fully repair itself i left it to late now i got referred to QE hospital for a transplant it is not nice such a worry explain to him

[Diamondbabe in reply to lonmallin50]

i am so sorry you are going through this. Have you managed to stop drinking?

I think his symptoms have started. He has lost weight, doesn't eat swollen face, tummy and legs. Just not turned yellow yet. I have tried all ways to help him cut down but unsuccessfully.

[lonmallin50 in reply to Diamondbabe]

yes not drink now for 8 months now i had my own pub since i was 25 yeays old 49 now finished work 3 years ago but the damage was done i use to drink about 18 pints a day wine with dinner I just hope i get back to comp instead of de comp but the outlook is not good when I joined this forum and read peoples stories it shocked me how much damage I done to myself I was in no pain at all I just thought no pain no illness how wrong I was l to had a puffy face as well he still got time i take now there no second chance when you get de comp for most of people

[Diamondbabe in reply to lonmallin50]

wow well done you for taking control.

[AyrshireK]

Just a wee general point (not a criticism) but I want to clarify that Hepatic Encephalopathy and WKS are not the same condition.

Hepatic encephalopathy (HE) refers to changes in the brain that occur in patients with advanced, acute (sudden) or chronic (long-term) liver disease. It is one of the major complications of cirrhosis.

If the liver is badly damaged and unable to function properly, it fails to process toxins properly and these ‘toxins’ can build up in the bloodstream. If they enter the brain, they can result in a condition called hepatic encephalopathy.

Whereas

Wernicke–Korsakoff syndrome (WKS) is the combined presence of Wernicke encephalopathy (WE) and Korsakoff syndrome. Due to the close relationship between these two disorders, people with either are usually diagnosed with WKS as a single syndrome. It mainly causes vision changes, ataxia and impaired memory.

The cause of the disorder is thiamine (vitamin B1) deficiency. This can occur due to Wernicke encephalopathy, eating disorders, malnutrition, and alcohol abuse. These disorders may manifest together or separately. WKS is usually secondary to prolonged alcohol abuse.

There are many folks on the forum who have never drank alcohol and yet have HE (my hubby included) - life long t-total with cirrhosis due to auto immune liver disease and a diagnosis of mild Hepatic Encephalopathy.

Katie