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    c9 and sporadic als

    Well, it's also the C9 mutation
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    c9 and sporadic als

    Just thought I'd throw this in here Nikki, my great grandmother had Parkinsons, and my grandmother had Alzheimers. My mother had ALS, her oldest brother had ALS, and now her youngest brother has ALS and Dementia (both ALS & Dementia are very slow progressing). Not sure if that's worth a...
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    Can one predict which regions will progress faster?

    I'm not an expert by any definition, but my uncle (third one on my mother's side to develop ALS symptoms) was diagnosed 9 months ago and only his hands have been affected. Recently though, the back of his left leg started cramping. This is apparently what will be affected next. Hope that helps a...
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    Newly diagnosed

    Sorry you are here, and sorry you, your family and your brother have to face this. ALS progresses differently in everyone, just like it presents itself differently. There is a new drug, AMX0035 that was approved recently and there are plenty of new drugs in trial. This place is also a wealth of...
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    Test results positive for C9

    No, my sister is still "asymptomatic." She's very concerned, but I've been giving her a lot of info that I get from here that seems to calm her down. I spoke to her about the CRISPR therapy that Nikki mentioned, I told her about AMX0035 and a couple other drugs that are having promising results...
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    Test results positive for C9

    She had breast cancer a few years ago, and I'm concerned that the chemo and radiation will have an impact on whether or not they begin early? What is a crispr? My mother's symptoms began when she was 68, and they were extremely slow (she died 2 weeks before her 75th birthday and wasnt...
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    Test results positive for C9

    So my sister just received her results regarding the C9 mutation, unfortunately she's a carrier. Is there anything she can do that would be preventative?
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    Giving up hope

    My mother and my uncle left this way. Don't do it, I want my mom back and I'm sure your loved ones will suffer just as much. Talk to your doctor and don't give up. I wish my mother had.
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    fALS and poss FTD?

    I was told with the C9 mutation it will either develop into ALS, FTD or both. Some of my family members have the gene, I was fortunate enough to avoid it (I lost my mother in 2021 to ALS).
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    Mother diagnosed

    Sorry to hear about your mom. My family has the C9 gene mutation, my uncle (eldest), my mother and her youngest brother all developed ALS (her youngest has ALS & FTD, recently diagnosed). I lost my mother last November, her symptoms first began in late 2014, and she wasn't diagnosed until mid to...
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