• John Russell posted an update 2 years, 3 months ago

    @dagmar-munn I just read that you take riluzol. I decided against it when offered early in my diagnosis. I thought 3 to 6 mos at the end was not worth it.
    Since you are remarkable in your success at fighting ALS, I am feeling some regrets. I’m into year 6 of my fight. I wonder if it’s too late to try Riluzol.

    • I believe Riluzole has best benefits when started early…. although you can always bring it up with your Dr.
      There are so many opinions about Riluzole — and ‘extending 3-6 mos.’ I believe it is: extends life before needing a trach. by 3-6 mos. Following a trach, Riluzole is no longer needed. Patients with a trach live 1-3 years following the surgery.

      Complex explanation. Hope that makes sense.

      • My situation,that is my wife having late stage Parkinson’s and no relatives in a position to be caregivers along with being 74, has given me reason to not go as far as a trach. Will add riluzol to my lengthy list of questions for my November clinic.

        • John, have you had your November appointment yet? Were you able to get your questions answered about Riluzol from your medical team? I was just thinking about you and wondered how things went. Wishing you the best.

          • I started Riluzole 3 days after Dx, have seen no effect or side-effect after 10 days. I also felt that the extra 3 months would probably not be terribly enjoyable, but it gives them that much more time to come up with an effective treatment. First appointment in the Multidisciplinary Clinic is in a couple months and really looking forward to that. An unexpected benefit of being Dxed is that my trips to doctors are reduced pretty-much to the MDC visits – once every 3 months to see 5 specialists, instead of at least 5 trips and little coordination among them.
            My biggest challenge now seems to be figuring out how to navigate this forum :).

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