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    • #13642

        New forum members when you were diagnosed did the medical testing include genetic testing? Did the doctor or team explain the results? If  you or a loved ones is a pALS caused by a genetic mutation you might want to read this article that was posted in ALS News Today a while back.  It’s been posted before, but I think it may help some newly diagnosed pALS understand the genetics involved.

        Another good website that helps explain ALS and genetics is


      • #13647
        Dagmar Munn

          Thanks Amanda — these are helpful sites that guide us through the confusing terms and concepts.

          Back in 2010, I wasn’t offered genetic testing. My doctor only recommended it if I knew of any relatives who had ALS symptoms. Which I didn’t. But, many of my family relatives came over from Europe and I can’t track back more than one or two generations. Health history is pretty sketchy.

          I think genetic testing should be included in anyone’s initial evaluation for ALS.

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