• 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 the c…[Read more]

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

    Thank you as always for your helpful advice.

  • As a member of the rare disease community, BioNews Inc. invites you to provide us with a typed, 150-200 word answer to the question, “Why does rare disease awareness matter to you?”  

    Email your response to [email protected] along with two high-quality pictures of yourself that capture your “why.” 

     We encourage you to share yo…[Read more]

  • Bevan, I noticed your comment about N-Acetyl L carnitine (1 g 3x a day) and L-Serine (30g a day). Is N-Acetyl L carnitine different from Acetyl L carnitine (without the N-), which I can find in bulk on Amazon. I tried the pills but can’t swallow them anymore. How do you measure 1g or 30g L-Serine? Can you mix L-Serine with one of the doses of…[Read more]

  • My Wife taking Relyvrio for 14 days now, For the last 3 nights (2 AM) she has a Spasms in both of her legs ( she is completely bedbound and has broken ankles)
    And sometimes she has difficulty breathing,
    I called Amlylyx and told my doctor they all suspected Relyvrio and told me to stop giving it for one week.

    Does Das anyone have this problem?

  • Ellen Isbell became a registered member 1 day, 22 hours ago

    • Hello Ellen,

      Welcome to the forum! I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by…[Read more]

    • Hi Ellen,
      Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

      We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

  • Ann became a registered member 1 day, 22 hours ago

    • Hello Ann,

      Welcome to the forum! I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by…[Read more]

    • Hello Ann,
      Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

      We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

  • I tend to agree with John about ” the vaccine possibly accelerating the otherwise slow progression of ALS.”

    I have assumed my ALS actually began on a cellular level in my body, way before my symptoms became noticeable. Therefore the experience of having a covid vaccination might be just the catalyst needed to spur on progression and have symptoms…[Read more]

  • I started experiencing ALS symptoms (left leg weakness & foot drop) the day after I received the COVID vaccine in May 2021.  My weakness progressively increased leading to my ALS diagnosis 10 months later.  My PCP advised that I take  no future vaccinations, therefore I only received only the initial COVID vaccination.  Zero symptoms prior to rec…[Read more]

  • Paula, I also have the so called coincidence of being diagnosed with ALS after the 2nd jab.  I was in good health, but then started downhill slide.

    Jim

  • 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!!!

  • James became a registered member 2 days, 6 hours ago

    • Hello James,

      Welcome to the forum! I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by…[Read more]

      • I was wondering if anyone has compared numbers of ALS cases in US by year to see if there is an uptick from pre covid vaccine to present. I know my primary care has more cases.

    • Hello James,
      Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

      We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

  • Greg Herrin became a registered member 2 days, 6 hours ago

    • Hello Greg,

      Welcome to the forum! I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by…[Read more]

    • Hi Greg,
      Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

      We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

  • John Kent became a registered member 2 days, 7 hours ago

    • Hello John,

      Welcome to the forum! I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by…[Read more]

    • Hi Greg,
      Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

      We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

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

  • JohnW replied to the topic Fear and ALS in the forum Living With ALS 2 days, 22 hours ago

    I personally have turned to Our Lord Jesus and the gospel messages. With Him you can overcome anything. Blessings to you and you family.

     

  • Paula, I caution you to connect having the vaccine and causing ALS symptoms. It most likely was a coincidence.

    I had severe side effects following my first two vaccines. They were both Moderna. Then for the third, I switched to Pfizer – – no side effects at all.

    I would recommend a few days of feeling the effects of either vaccine over having a…[Read more]

  • Dagmar Munn replied to the topic Swollen Feet in the forum Living With ALS 2 days, 22 hours ago

    Some medications can cause water retention and swelling of the arms, hands, and feet.

    So can inactivity (mostly sitting/laying in one position for too long). It’s important to move our arms and legs, ideally every hour. If the person with ALS cannot move on their own, then a caregiver should help with passive range of motion exercises.

  • ALS does 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.

  • 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 goo…[Read more]

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