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  1. I

    Insurance Rejections

    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...
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    Fast progression?

    Apparently the pulmonologist asked for a higher cost machine called an AVAP or something like that. This is according to my PALS. I really didn’t understand because the denial letter said if the doctor ordered a bipap, which is what I thought he was ordering, it would be approved. The cut off...
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    I made an ALS Discord server!

    My teenagers are on discord so I will let them know about your server. 😃
  4. I

    Fast progression?

    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...
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    New CALS - totally broken-hearted

    Hello: I sorry your are here and I feel your pain. My husband is my PALS and he was diagnosed in November 22. There was life before and life after that day. I cry every day on the way to work and again on the way home. Talking to a therapist has helped me to continue functioning but the pain...
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    Day 1 of 2 first clinic visit

    Thanks!
  7. I

    Day 1 of 2 first clinic visit

    Thanks for the information, especially about the breathing. No worries about the diagnosis date. I tried to change it in my profile. I cannot figure out how to do it, so I just keep listing it in my posts. I’ll try again to change it in my profile. I feel a little better today. I have my list...
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    Day 1 of 2 first clinic visit

    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...
  9. I

    Scared, Sad and Overwhelmed

    He had a pulmonologist for allergies, but I’m going to call the Dr about the breathing issues tomorrow. Interesting that the numbers bounce around. I’ll tell Larry. Any type of hope is good news (as good as it can be with ALS).
  10. I

    Scared, Sad and Overwhelmed

    That’s sad to hear most don’t qualify. I was so hopeful that we could be part of something that works. I’ll keep praying.
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