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  1. B

    Brother just diagnosed limb onset we both have pathogenic c9orf72 expansion.

    blh8287 Been awhile since I've been on here. My neurologist and researchers believed my problems were from a mutation they found on IRF2BPL. Spacisity in legs and dystonia all upper body. They ended up implanting a Baclofen Pump. A couple months back, my brother got diagnosed limb onset ALS...
  2. B

    Situation update...been awhile

    I started experiencing cramps and twitching last year. I had a "borderline" EMG last year. I have tertiary esophagus motility, slowed GI transit time. My piMax is 74 and PeMax 62.. A breathing muscle endurance test was 17%. Pulmonologist looked at a chest CT I had done last year and pointed...
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