W - K Syndrome. What To Expect?

[BSA-3]

Hi everyone, I hope you're all as well as can be.

Just a quick question. Do any of you have Wernicke's? I asked my Cons if the HE was getting worse because I've noticed some strange things recently, and not just what I would class as mild HE but totally different to full-blown HE. She looked at a CT and mumbled something about 'brain', 'atrophy' and 'alcohol'. I thought no more of it but things are getting worse so I asked my GP. She said that it wasn't HE, phew!, and then I said, it's bloody Wernicke's, isn't it? She said yes, but I'm stable at the moment! It all started to make sense. I had a head MRI a while ago which I never knew the reason for, and it would certainly explain why I can't walk and suffer so badly with my feet. I've had all the thiamine treatment and not responded so I'd like to know how fast it progresses, what happens etc. It was first mentioned in 2008 as having begun in my legs and that it'd spread to my brain if I didn't stop drinking immediately. I didn't, I drank vastly greater amounts until my liver failed, so I've only myself to blame, I know that, but why wait until now to give me a dx? Anyway, I digress, I'm not ashamed to admit that I'm scared. My body might be buggered and I have a pathological fear of all things Mental Health, so I'd like to know what I'm looking at. My GP has said that it's not a good prognosis at this stage, so I'd be more than grateful for any info. Thanks in advance. Take care.

[Brett11]

Are you taking about Wernicke encephalopathy? I have that. At the moment, thiamine is the only help. I walk like I am drunk all the time. I use a walker to stop me falling over. It’s caused by alcohol abuse. Apparently something in the back of your brain “dies” that controls movement and balance. It can’t be cured only stableised with thiamine. It’s a nusience but you get used to it. Of course, drinking alcohol will only make it a lot worse.

Cheers,

Brett

[BSA-3 in reply to Brett11]

Hi Brett, yes, it's Wernicke- Korsakoff I have. I've been dry for over 2 yesrs and I had intense IV thiamine therapy when my liver went it's merry way and then tablet form in Vit B strong compound. Apparently, if there's no change after 18 months or so then you are stuck with it and it's progressive. W-K doesn't just affect gait, it affects memory, cognition etc. I can't walk because of it and the pain is truly incredible but it's the mental side that bothers me most. Thanks for replying mate. Take care.

[Brett11 in reply to BSA-3]

At least we are not alone. I didn’t stop drinking for a couple of years after my Wernicke encephalopathy diagnosis. So that led to F4 cirrhosis. Hindsight is a good teacher lol. I’ve not had a drink since October 2016.

[BSA-3 in reply to Brett11]

Feb 2016 for me.

[Faithfull in reply to Brett11]

I just got over the 3rd (hurdle ) year I ain't really talked to X drinkers we not alone even the ones that never drunk are so helping me as area is shit hospital social care ect the one thing I keep going to put cheers for months but at least I can confess that now I no it's just as saying but you no what I mean I hope x

[Faithfull in reply to BSA-3]

Understandable as the only thing I'm educated on is mental health but not threw illness as I got the confusion getting worse and having mental health anyway it makes me think I'm a hypercondriac and fighting to see GP on urgent basis

[Faithfull in reply to BSA-3]

Yes I'm mentally ill as it is and got so many things wrong I walk into things vertigo yes was chronic drinker

[bluemoon2 in reply to BSA-3]

Yep it's a bugger chirrhosis you name it I've got it only thing I aint got is hop ears,that really would cap it all.

[Faithfull in reply to Brett11]

I no I already have mental health I'm taking thiamine the neuroligist put me on it and strong b compound and said I needed chronic liver managment 3month later discharged gastro discharged neuro as for two yrs ment to under neurosurgery small meningomia can't spell it in brain so be waiting another yr to see if it's grow

to be watch and wait

[Faithfull]

I feel the grief of it all for you true as I done me own body in drugs litre vodka or whisky day and during night .

Had to stop had radical hysterectomy.

Stopped after that as blood level function test red flags on all and sicking blood it's all long

I've been disharged as new hospital said I have nothing wrong and I already have ADHD so it's different but I no you fear the

[Faithfull in reply to Faithfull]

Sorry sent it wrong the fear of mentally ill I've had the confused feeling I'm trying to control it but I got no answers but I support you all the way please don't drink I'm prime example done myself so much damage that 3yrs sober and I new stopping drink could have killed me the way I just stopped and I am ashamed to put this that yrs ago I overdosed bad , to take me life which the liver dr when I told truth as I'm so ill she disharged me as said the diagnosis was wrong from anther hospitals I I'm sorry I had to explain as you ain't on your own with the drinking many times I could drink but I could not do the detox again love hope you get some more help than I'm giving xxxx

[Caspiana]

*HUG* 🌹

[Angelann69]

This is the first I've heard of this. What an eye opener. As an ex drinker with extremely poor nutrition due to pancreatitis, this might explain why I feel so much better after an injection of vitamin B. Thank you for posting this. Does the thiamine no longer help you? What I've read which isn't all that much in the last 15 minutes the problem can be helped by thiamine. Congrats on quitting drinking alcohol.

[BSA-3 in reply to Angelann69]

Hi Angelann69, I'm not a doctor obviously, but the way I understand it is that if they get it early enough it's treatable with thiamine but if you continue with the booze, poor nutrition etc then it isn't reversible and is progressive. Brett mentioned Wernicke's which affects your gait amongst other things and it's usually diet-related that's exacerbated by alcohol whereas Wernicke-Korsakoff is caused by alcohol and made worse by bad diet. W-K causes lesions and atrophy in the brain and eventually affects everything from gait to cognition and short-term memory. I can't walk because of it and something is definitely going on mentally so I'm waiting to find out exactly what's going on. The prognosis is not good apparently. Please don't quote me on the above as it's only what I've managed to glean from people in the know as it were. I hope this is helpful to you. Take care.

[Angelann69]

Ohh, I read the good part and didn't believe the bad. I do now. Thanks, Brett.