Does anyone know anything about ALS or Wernicke-Korsakoff?

[MosMom]

My mom is convinced she has ALS. She called my brother yesterday and poured her heart out to him. My grandpa died of ALS in June 2001 and she is convinced she has it. Actually, she says she has had the symptoms since around the time he died (3 years ago now). However, generally, ALS is a quick progressing disease and her physical symptoms haven't really progressed much. However, she is a raging alcoholic and I really feel she has Wernicke-Korsakoff syndrome. My mom fits both aspects of the disease perfectly. Being that she has been a chronic alcoholic most of her life, it is likely this is what she has. I would tell her this, but we don't speak anymore.

I have asked my brother to say something to her but he feels he doesn't want to rock the boat. She has progressed to the point where she is having muscle atrophy and trouble with her gait. She has trouble climbing stairs as well. She experiences anterograde amnesia and often confabulates (makes up elaborate stories to fill in memory loss...there is debate as to whether or not this is done consciously) to cover up her memory loss.

If she does have ALS, that would point to familial ALS which scares the heck out of me. I fear that even if she is told she has WKS she will still try to play it off as ALS rather than take responsibility for her alcohol related illness.

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For those with experience with ALS, did it progress quickly. It seems unlikely to me that she would be experiencing relatively the same symptoms that she had 3 years ago. It seems most people don't live 3 years once they realize they have symptoms.

I'm scared she has ALS even though I know it is most likely an alcohol related illness. Either way, she is going to die. However, one (ALS) affects myself and my children.

Has anyone here experienced family members or patients with WKS? I know it is rare and often underdiagnosed so I'm not sure if anyone here would have experience with it.

I've been scouring the web and not finding much so I figured I would try here.

 

[Dan Murphy]

No help from me as to your questions, Bridget, but do hope you get your answers.

 

[Microcell]

I couldn't tell you, but have they isolated a gene for ALS yet? Maybe you could get tested. I never even heard of the other. My mom was an alcoholic and had motor function problems at the end of her life that were attributed to Hardening of the Arteries. She had trouble driving and spilling food when she ate. She had trouble functioning with simple things like paying the bills or going shopping. SHe also had memory loss to some extent. She even got so bad the last year of her life that she didn't drink a drop becasue she could not get out of the house to drive to get the alcohol and none of her kids was of age to get it for her. I am thinking my mom was not only getting little air to her brain, thus causing mini strokes but it was exaserbated by depression. She was also Diabetic. There was no shortage of causes of death for her. I hope it works out for you and your mom too.

 

[lsyorke]

The patients I've seen with ALS have a pretty rapid progression of symptoms. W-K syndrome sounds more like it due to the history of alcoholism. Treatment for W-K is available(Thiamine) so I would recommend getting her to a doctor (I know, easier said than done!) since early treatment is imperative with A-K.
Good Luck!

 

[ilovepcot]

All the symptoms you noted your Mom experiencing DO point to W-K syndrome. It's true that they are very much like those of ALS. But.....an ALS patient will most likely have experienced some respiratory distress after a 3 year old diagnosis. In fact, in this time frame, many are compromised to the point of not being able to even speak.

Do you know if your Mom is complaining of vision problems....especially double vision? Tingling in hands and feet or dry scaly skin? These are more symptoms usually associated with W-K syndrome and not ALS.

I've had MANY ALS patients that I did private nursing for over the years. None so far have ever been aware of other family members with it.

I have a family member that does research in this area. Unfortunately, she is in the process of setting up a research lab at a new facility. I will email her and ask about a gene being isolated that is responsible for ALS and ask if testing is possible. Have NO IDEA when she can get back to me on that!