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My pals has had 2 big insurance rejections this week. The first was the ventilator. The insurance says no even though he qualifies bc his FVC(?) is below 50%. The pulmonologist asked for an AVAP ( not sure if that the right term) but insurance says my Pals only needs a bipap. The drs response...

My PALS feels his progression is fast. In November 22 when he was dx, he had trouble walking and his weakness in his arms, muscle twitches and tremors. Today he can still walk, but it’s gotten slow and he had a fall recently so he uses a walker. His neck is starting to droop and his posture is...

We went to clinic for the first time today. Lots of tests but nothing different from was done before. My husband was a little frustrated about that. We thought there would be a bunch of different tests like a muscle biopsy or something like that. He also wanted to know how long he has. Dr...

Hello: I have been lurking around for the last few months hoping my husband didn’t have ALS, but he was officially diagnosed on Tuesday. I feel so overwhelmed and sad. We plan to tell the kids this weekend, and I feel like I’m watching the last days of their childhood innocence slip away which...