Suspicious for fALS?

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ALSquestions

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Hello, all,

Thank you in advance for the wisdom of the group. My mother is likely to be diagnosed with ALS at age 71, though I’d estimate her symptoms began at age 68 or 69. Her brother, age 74, was recently diagnosed with Alzheimer’s, but the presentation sounds suspicious to me—paranoia, maybe some sort of psychosis or delusions, but seemingly not a major memory issue. I’m not in touch with him, so I don’t have a good deal of info, I just know he was acting “crazy” before his diagnosis (decided to run away from his wife, without any money, got picked up by the police at a train station, generally acting strange and not making sense) and seems much better now that he’s on treatment, but I don’t know what drugs he’s getting. But maybe it is AD and it’s just more advanced than I would recognize, not being in touch with him?

Their mother lived into her 90s without dementia or any nerve/movement disorders. Their father died in his mid-50s of a heart attack. Their paternal grandparents, as far as I can trace, both died at age 71, but I don’t know the cause. I also know nothing about their father’s siblings.

My mother has some signs of dementia, so her ability to provide a family history is not reliable.

What should I make of all this? Any thoughts on whether this seems suspicious of fALS?

Thank you so much. Trying to wrap my head around all of this. I wish you all well.
 

lgelb

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I don't see any reason to think of a familial ALS. Sorry to hear about your mom and uncle. We're happy to support you however we can.

Best,
Laurie
 

Nikki J

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I assume you are worried about your uncle being misdiagnosed and having FTD? His symptoms do sound consistent with AD but I can see why you raised the question. Remember AD is a common disease.

If your mother is definitely diagnosed it would be reasonable to ask for her to be tested for C9 if she agrees. If there is a problem it is going to be C9
 

ALSquestions

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Yes, exactly—I’m concerned about FTD but relieved (from a genetics perspective) to hear that my uncle’s symptoms could also be consistent with Alzheimer’s. I will ask about C9. It’s one of those things where I’m not sure if it’s better to know or not.
 

Nikki J

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I encourage you to try to get your mother tested If she is diagnosed. I think it will be negative which would relieve your mind. If it happens to be positive there may be a trial for her ( there is one very competitive that is going to enroll another cohort soon and others expected later this year). Even more so though you could participate in research ( possible to do so without knowing status) and we are close to prevention trials
 
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