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    • #14658
      Amanda
      Keymaster

      An article today in ALS News Today discusses possible risk factors associated with ALS. https://alsnewstoday.com/2020/02/28/trauma-sports-herbicides-other-factors-may-increase-als-risk-small-study-suggests/  The article discusses a correlation between head trauma, certain supplements, smoking and herbicides and a greater risk of ALS.  It does not state that any of these things are a direct cause of ALS.

      A major piece of the ALS study I volunteer for includes collecting information on environmental factors such as diets, lifestyle, physical activities, chemical exposure, medical conditions, etc. They update this information 5 times a year. All of the information they gather is shared with other researchers.

      When you were diagnosed did your medical team ask any questions about environmental factors? If yes, did they use that information for research purposes? If you have been involved in a clinical trial or research study, did they collect information on environmental factors?

      What are your thoughts?

    • #14661
      Dagmar
      Keymaster

      The article’s headline grabs attention, but… upon reading through, it only proposes possible risk factors – – nothing conclusive.

      Plus, the study was on only 95 ALS patients. I would be interested if it were 300+; representing a broader group.

      And no, my physician didn’t quiz me much about environmental exposures. I read about possible connections and when home wracked my brain thinking of anything in my life history. But, since no one else I grew up with had ALS, I figured my environmental exposure risk was low.

      I think the medical community is still at square “1” figuring out risk and cause of sporadic ALS.

    • #14662
      Amanda
      Keymaster

      You may be right, they me be at square one in regards to Sporadic ALS, unfortunately.  I think they are making gains for ALS that is associated with some genetic mutations. I am grateful that they are asking questions in the research studies and looking into all possibilities. I thought the article was very clear about it being a small sample and it merely being a correlation. It is another area that more research is needed in order to learn about ALS and how to treat the disease.

    • #14663
      Diana
      Participant

      Very attention grabbing!
      Environmental exposure are triggers not causes.  We’re all exposed to the same environmental toxin or trigger some more than others.  I went to an alternative allergy testing clinic to find what I was exposed to.  For me I have an abundance of nickel and aluminum in my brain and organs. Lived in a city that’s the nickel capital of the world next to a rail repair yard inhaling aluminum all my life. All my homes had plenty of black MOLD I would clean by hand unaware of how bad that was. Then two years ago we moved to a new home with our children. It had a spider infestation ewe! We had it Sprayed twice spring and fall. The Spiders were big, like sick spiders.  November that year I lost my right foot and left hand function.  So there is something to  say about environmental triggers for any neurological condition. As the are growing in abundance these days.

    • #14664
      Amanda
      Keymaster

      @Diana, that is very interesting. Thank you for sharing!

       

    • #14668
      Dagmar
      Keymaster

      You are certainly correct Amanda – – more research is needed, and, at least they are asking the question.

      For someone like Diana, there may be straight-forward connections to link exposure to neurological issues. For many of us, there are yet no links.

      The article points out the need to follow this lead, however, I worry that research dollars are being wasted on badly constructed studies and/or down a blind alley. We need researcher to also look at the big picture. For example, the study mentioned a “possible connection” with supplements – – but that is a present-day patient population – – 50 years ago, these supplements weren’t available, and people still came down with ALS.

      It’s always prudent to check out the research quoted in articles on ALS. We pALS need to be wise consumers of the vast information that’s out there.

    • #14670
      John Russell
      Participant

      I think I have mentioned this in other topics. I live in an area where per capita incidence of all neurological disease is higher than expected & ALS seem off the charts. Dr. Stromal of Dartmouth Hitchcock has been investigating this and I submitted a questionnaire and hair & nail samples. He is linking the blue green algae blooms on Lake Champlain & other smaller bodies of water to this. Recently ALS News Today published a study where BMMA, a blue green algae toxin, was given to monkeys and caused motor neuron damage which was mitigated by large doses of l-serine. A study has begun treating pALS with 15 g l-serine 2 × day. Since this is a common supplement I would be interested in hearing from any pALS who take it.

    • #14680
      Dagmar
      Keymaster

      John- – thank you for pointing out this article. In it, researchers were able to use the toxin BMMA to induce ALS in monkeys; thus, confirming environmental (in this case, dietary) exposure to a toxin can cause ALS. The researcher’s goal was to produce an animal model that simulated sporadic ALS. Up to now, most animal models are genetically engineered – – and more similar to familial ALS.

      But yes, of interest to us pALS, is that the monkeys fed with the diet BMMA + L Serine, showed less damage to their motor neurons and spinal cords. Certainly a potential treatment worth following it’s progress in clinical trials!

      The results (and dosages) of a phase 1 trial can be found here:

      https://www.tandfonline.com/doi/full/10.1080/21678421.2016.1221971

      A phase 2 trial is currently open for enrollment and will be studying 15g of L-serine 2x/day: https://clinicaltrials.gov/ct2/show/NCT03580616#contactlocation

      (“L-Serine is a naturally occurring dietary amino acid. It is abundant in soy products, some edible seaweeds, sweet potatoes, eggs and meat.) So, this is indeed an interesting lead to follow, for it’s future possibilities!

    • #14687
      CHERYL A KUHTZ
      Participant

      I am part of the clinical trial that Dr. Stommel is conducting at Dartmouth-Hitchcock, and I have been taking 30 grams of L-serine daily.  It’s probably too soon to tell if it’s helping, but I think the research is quite promising.  It isn’t a cure, but the human subjects in the small initial trial as well as the vervets have shown a significant reduction in progression of symptoms.  I believe the trial is still recruiting patients, but you can also purchase L-serine on Amazon.  The movie Toxic Puzzle, which can be seen on Amazon Prime is very informative on the subject of BMAA and L-serine.

       

    • #14689
      Bill
      Participant

      I was not asked about environmental factors when diagnosed in 2017/18.  Related to a later study I was in with UofMiami, I completed a detailed lifetime survey about hobbies, everywhere I lived, occupations and such which very much dealt with environmental factors. I was in preFals and CReATe ALS there so it was related to one or both of those.
      I have been exposed to no glaring risk factors, just probable hereditary cause.

    • #14710
      Marianne Opilla
      Participant

      Statins.  My symptoms began with use  of statins and continued after I stopped taking them.  I think that was my “trigger”.

       

    • #14729
      John Russell
      Participant

       

       

    • #14737
      Jonathan L Maddock
      Participant

      I have read of various life-styles, head trauma, ethnicity, sex, etc that increase the chances of acquiring ALS. I seem to hit on a few:

      1.) I’m 40% Irish decent. I read that Irish & Italian descents are more prone to ALS

      2.) Exercised regularly my whole life, sometimes to extremes.

      Bicycling, running, cross country skiing, down hill skiing, inline skating, figure skating, sailing…

      3.) Two known concussions. One in my 20’s when I was hit by a car while bicycling. Second one in 2016 when a car passed illegally and hit my car head-on.

      I’m turning 65 in March 2020 & was diagnosed July of 2019. Symptoms had begun in August of 2018. My hunch, and only my hunch is that the car crash/concussion in 2016 was the trigger point. After the accident it took a couple of months for my ability to concentrate to become normal. I had nerve damage that caused my eye pupils to now always be of different size (Horners Syndrome).

      Who knows what mysterious concoction of circumstances caused the ALS? Someday it will be more identifiable.

       

    • #14746
      Dagmar
      Keymaster

      Cheryl, thank you for sharing the recommendation for the movie – – I plan to watch it!

      By the way, have you experienced any digestive side-effects from the L-serine? I read that in the phase 1 trial, several patients dropped out due to that. Just wondering if it is a manageable side-effect or, in individual cases.

    • #14747
      Dagmar
      Keymaster

      Jonathan – – I am not aware that Irish and Italians are more prone to ALS…where have you read this? Not sure, if ethnicity has been fully explored yet to confirm this.

      Also, you list your exercise… which again, has not been identified as a risk factor (I think the media finds athletes with ALS a better story than the average-joe).

      However, head trauma seems to have a triggering link. So yes, we are still left sorting out our past circumstances trying to discover “the clue.”

    • #14818
      CHERYL A KUHTZ
      Participant

      Dagmar, I have not had any adverse reactions to the L-serine.  I take 15 grams in the morning mixed in orange juice and 15 grams in the early evening with juice.

      Cheryl

       

    • #14820
      Dagmar
      Keymaster

      Thank you Cheryl 🙂

    • #15458
      John Russell
      Participant

      Dr. Stromal at Dartmouth Hitchcock hospital in New Hampshire has done extensive work on a link between toxic blue green algae & ALS.

      When I was diagnosed one of his researchers had me fill out an extensive questionnaire covering most of what I could remember of my life with particular emphasis on where I’d lived, sources of drinking water an aquatic recreation. I also gave hair & nail samples.

    • #15462
      Danielle Uskovic
      Participant

      Thanks @johnjr for the information

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