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  1. M

    Right to try refused

    @JAM you can also ask the neuro about Radicava ORS which is approved for ALS. Your insurance should cover it too although you might have to file an appeal of whatever if they deny it at first. I’ve learned that everything requires a fight with insurance over the past two years. My PALS...
  2. M

    Ambroxol trial

    @powerpadman - we didn’t ask for those ones. We did try dutasteride prescribed by PCP (neuro said it wouldn’t hurt to try it but ask the PCP to prescribe; we didn’t notice a difference). And we’re trying something else now (prescribed by PCP) but that’s kind of related to a separate health...
  3. M

    Ambroxol trial

    Jam, I agree. We wonder if the ALS clinic doctors that we’ve encountered are just focused on treating his symptoms caused by ALS (ordering a BiPap, medications for secretions, feeding tube, etc). And of course they prescribed the 3 R’s (we tried Relyvrio from the time of approval until the...
  4. M

    Ambroxol trial

    Jam, we found the ALS doctors we’ve encountered (at two different ALS clinics in Seattle) seem to be unwilling to try anything other than the medications that are approved for ALS. When we asked to try something experimental we were told that it wouldn’t hurt to try, but we should ask our...
  5. M

    bulbar onset diagnosed 8/2024, has anyone passed away when they could still walk and use their arms?

    Gschamb - my PALS pushed back on the feeding tube idea for too long, but I don’t think he would be alive at this point if he didn’t have it. He’s had the feeding tube since august of 2023 and can’t eat/drink anything anymore, but he’s still able to walk around, albeit with some foot drop now...
  6. M

    Diagnosed

    Yeah, my PALS score has been continually dropping over the course of 2 years which correlates with his disease progression. He’s now at a score of a 17 - 2 years after diagnosis. However since that score (early august), I bet he’s even lower. But I don’t think everyone progresses as fast as...
  7. M

    Diagnosed

    Laura - only dropping 1 point in a year sounds promising!
  8. M

    Treatment with the AIDS cocktail

    Elizabeth, thanks so much for posting this! My 42 year old husband is 2 years in with advanced bulbar onset and respiratory involvement that qualifies him for hospice. But I wonder if it might be worth asking his neurologist about this … it doesn’t hurt at this point.
  9. M

    Diagnosed

    Jam, I understand. It took me awhile to move through the stages of understanding it, past denial (wondering if it could be something else), through anticipatory grief, etc. Be kind to yourself. We have two little kids so we didn’t consider traveling to other clinics, but if you are able to do...
  10. M

    Diagnosed

    Hi Jam, I’m sorry to hear of this news. When we were doing a 2nd opinion we encountered a Dr. who was similar to the one you saw (very direct, not very empathetic, etc) and so we decided to go with the other Dr. who we found was kind. My husband was diagnosed at age 40 and just turned 42. I...
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