Karsikoff syndrome

Fred10462

Pretty new to this. My DW was an alcohol abuser. After several seizures and falls she has gone sober for about 2 years. Her short term memory is awful and she has confabulations. No doc has yet diagnosed her with anything other than dementia, My own research leads me to think she may have Karsikoff syndrome. The difference between that and other disorders written about in this board seems to be that Karsikoff is not considered  a progressive condition. There is so little information out there on this. ANyone know anything about it?

Thanks to all you patient and wonderful people.

Rescue mom

I’ve only heard of Wernicke’s-korsakov syndrome (unsure about spelling) which a friend had. She was diagnosed and treated by doctors. She had some problems we see in dementias, and other issues as well. There was a lot of “physical” deterioration, beyond the loss of brain function/cognition. Doctors were very involved, but it did advance.

 It seemed like a complex, complicated, extremely ugly disease, with connections to longtime alcohol abuse and severe vitamin deficiencies.

Have you asked your doctor about that specifically, whether it was considered? And why or why not; I assume her past with alcohol is known.

LadyTexan

My DH had been an abusive drinker much of his life, beginning in his teens. At one point he celebrated 15 years of sobriety but later returned to his alcoholic ways.

In 2016, when I first began noticing something was off with my husband, he was drinking alcohol abusively. His balance was off, he was easily agitated, he started having trouble at work and was also having trouble with math and his sense of direction.

After the fifth auto accident in 13 months, we started seeking medical guidance. The PCP suspected Korsakoff Syndrome. The PCP emphasized to my DH, the necessity to abstain from alcohol. I will stay that DH continued to drink for quite a while. Meanwhile the PCP started running lab tests, neuro-psych tests, MRIs, et cetera. The PCP determined that DH had NO vitamin deficiencies. This led the PCP to pursue other explanations for my DH's dementia symptoms.

I read quite a lot about Korsakoff Syndrome at the time. For example: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5708199/

We were hopeful that if DH embraced recovery, that the dementia symptoms would abate. Unfortunately, that was not the case for us because DH's PET scan revealed he has Younger ONset Alzheimer's Disease, not Korsakoff Syndrome.

DH finally stopped drinking alcohol. He is now mid-stage 6 in the Alzheimer's disease progression.

harshedbuzz

::waves hand::

Unfortunately, I am very familiar with Korsakoff's Syndrome. It is sometimes referred to as Wernicke-Korsakoff's Syndrome.

Wernicke's psychosis is caused by a Thiamine deficiency and is the acute and even treatable (to some degree) phase of WKS. The deficiency is most often seen with alcohol abuse, but it is also seen in starvation, eating disorders, bariatric patients, certain cancers and HIV. Treatment is abstinence and IV supplementation.

Korsakoff's Syndrome is a progression of untreated Thiamine deficiency. WKS is sometimes referred to as an amnesia-like condition. In addition to the striking tendency to confabulate, people with WKS often have trouble regulating body temperature (always cold- dad turned on the heater if it was 85F in August), an odd sometimes reeling gait, significant spatial reasoning issues, eye involvement including uncontrolled movements. Anecdotally, the ones I have known were suspicious and prone to antisocial behavior. I always wondered if the behavioral symptoms of WKS are more a function of overt mental health issues as the ability to socially filter is lost rather than a symptom of the kind of dementia. Mentally healthy people don't tend to become alcoholics.

I will also say that most of the information I found on WKS came out of the UK and Australia; Google Scholar has a number of articles. I've heard there's a genetic predisposition to it that is more prevalent in those of English-Irish ancestory. Not sure if that applies here. It did for my family.

My dad was diagnosed in middle stages with WKS at age 84 because of an awful psychotic breakdown. We took him to a university teaching hospital with a memory center affiliation and the resident proactively treated him before he was even admitted. The attending felt he had "garden variety Alzheimer's" but let the order for IV Thiamine continue. Dad was turfed after a week to a rehab for 7 more weeks during which time he had no access to alcohol and his head cleared a great deal.

On discharge we followed up with a neurologist at the Memory Center. That doctor ran more tests including a contrast PET scan and gave dad a mixed dementia diagnosis- WKS and ALZ. At the time, he said the ALZ was very mild; dad could still perform pretty well on the MMSE and MOCA. He said the WKS could potentially be arrested where it was, but that even with abstinence it might progress. Given that he did also present with ALZ, it would be hard to parse out. Of course, once we got dad home access to alcohol became an issue. He drank and his dementia got worse fairly quickly. 

My dad had a nephew who died from complications of WKS according to his sister. I was told he was diagnosed around the time he was 50 and that his son set him up in an apartment and managed his IADLs. I heard that he stopped drinking around this time but I wonder because he died from "dementia" before he turned 60. His estranged sister, an RN, doesn't feel she has enough information to know whether he was drinking again or if the disease progressed anyway. 

I suspect my sister also had WKS in the last year of her life. She was sort of a practice run for my dad. She died from complications of AIDS before treatment made this a more chronic condition. She definitely had some sort of dementia; and had issues with vision, gait, being cold, being paranoid and wildly conflating stories.

My father was diagnosed fairly late in the game because my mother felt disloyal pushing for an evaluation. I would put him at stage 5 around the time of diagnosis in late 2016. He progressed quickly and passed in spring 2018 from complications of the Alzheimer's (aspiration pneumonia). His progression was a little unusual in some respects, he did time travel and his short term memory/executive function and spatial reasoning skills were ghastly, but he knew my mom and I up until the end and he had very little loss of language skills. He spoke with a decent vocabulary and told stories and jokes during his better times of day. 

A couple of caveats-

1. WKS does seem to occur in women at lower levels of consumption, but it's not something many clinicians look for. It really angers me to think of all the doctors who saw my dad and never put 2 + 2 together. The week before I took him to the big city ER, his local small hospital missed the diagnosis entirely. If you can, go to a bigger memory center and make sure you share your concerns with the doctor either on paper ahead of the appointment or during a chat with you wife out of the room.

2. This is a diagnosis that comes with a lot of judgment in some places. The Memory Center to which we took dad was great diagnostically, but many of the clinicians side-eyed my mom and I an accomplices in a kind of self inflicted wound. This was hard. I will also say that WKS has a reputation among those professionals who provide care. My mom's first choice MCF refused to offer dad residency based only on their fear that his diagnosis would lead to more difficult behaviors even though he was on his best behavior during his intake interview. 

Good luck.

HB
(Harshedbuzz)

[Deleted User]

The user and all related content has been deleted.