Viewing 8 reply threads
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    • #23396
      Sonsu
      Participant

      My husband is dealing with loss of appetite and loose motions for over a month now. This leads to overall decline. Is anyone else going through this.

    • #23414
      George
      Participant

      my partner has experienced this for quite some time.  Nothing seems to resolve the loose bowels.

    • #23415
      Sonsu
      Participant

      Thanks George. How long you are having this issue.

    • #23417
      Kathleen B (Katie)
      Participant

      I was having the issue when 1st tried using Riluzole…plus EXCESSIVE fatigue…so I had to stop Riluzole after 4 weeks.  Bowel issue persisted, so I started reading labels & tracking foods eaten for connections.  Turned up soy, advocado, fried food, all made list on  worse days… but my Primary Care did a blood & urine test that showed I had ZERO good gut bacteria.  So, I’ve been on a specific probiotic she recommended, (4x daily) and I am out of the loose bowel category most of the time (eating out still creates havoc, but I’m prepared).

    • #23421
      Dagmar Munn
      Keymaster

      ALS does not traditionally affect the digestive system or bowels. Perhaps you should look toward certain foods or medications as the cause.

      Probiotics may be of help. Or a daily serving of Greek Yogurt.

      • #23425
        Gideon
        Participant

        Greek yogurt mixed with Manuka Honey ( reduce inflation) and tea spoon of olive oil,

    • #23427
      Karen Goldhirsh
      Participant

      My husband had issue of loss of taste and appetite as well.  VSL#3 probiotic has made all the difference.  Our Costco has it approximately a dollar a pill taken once a day has made all the difference!!!

    • #23437
      Louise Cort
      Participant

      Dagmar, did you mean to write “ALS does NOT traditionally affect the digestive system or bowels”?

      Thank you as always for your helpful advice.

      • #23441
        Dagmar Munn
        Keymaster

        oops, oops, oops! Yes, Louis, I meant NOT… apologies everyone for that typo (and an important one too!) ……..I’ve edited my original comment to prevent future misunderstandings 😉 Thank you for cathing that one Louis 😉

    • #23439
      Amanda
      Keymaster

      This is interesting. For years I’ve been seeing doctors because of digestive issues and pains in my abdomen and 2 colonoscopies, x-rays, cat scans, fod map diets, food allergies, gluten and all kinds of things over the years has ruled out crohn’s, diverticulitis, colitis and everything else. This is all over a decade!   I had an episode of severe muscle cramping and pain while I was at the ALS clinic during a pre-fALS study visit a few years ago so they started monitoring some of the muscles in that area.  After a few years, and finding out that other people (and family members) with the exact same mutation also have had this symptom, my doctor suspects that is is likely linked to ALS in my case.  Keep in mind that every case and person is different, I just found this interesting.

      • This reply was modified 3 days, 15 hours ago by Amanda.
    • #23451
      Kathleen B (Katie)
      Participant

      Whew! —I was feeling like an anomaly of some sort with the digestive/bowel issue…thank you for that final comment; I am thinking that this is another example of ‘new learning’ about ALS—especially as it becoming more studied.  Seems it is more complex & heterogeneous than formerly understood.   Some day, it might even rise from the rare disease category to more of a ‘spectrum disorder’ category (meaning that sub-groups exist under the large umbrella name…beyond just the familial & sporadic designations).  Hope opens doors to anticipating possibilities—thanks to all forum moderators, writers and participants!

      • #23458
        Amanda
        Keymaster

        @Katie

        I absolutely agree!! I think as we learn more and more about the different causes and triggers of ALS “we” will know how to classify and treat cases. We already know that each genetically linked case can not be treated the same way. The Tofersen treatment for the SOD1 mutation will not fix what is wrong in other mutations that lead to ALS. The good news is that the technology can be used!

        Amanda

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