als

  1. Tholsclaw

    ALS Clinic in Charlotte- Any tips or tricks?

    I'm being sent to the ALS clinic in Charlotte by my Neurologist, mostly for a second opinion (strong family history). I've read the first clinic visit suggestions. But are there any other suggestions regarding traffic, parking, or anything else I should know. I'm completely mobile, independent...
  2. Squallx

    Is this ALS? An update.

    Hi again! I wanna start by really thanking you who keep answering me and everyone else here in this forum. To just get some feedback from people who have real experience of this disease means the world to all of us. So again! Thank you so much! 🙏🏻 So time has passed since my last thread and I...
  3. W

    Could this be ALS in a 21 year old with no symptoms?

    Hello--My daughter who is 21 years old recently had an EMG exam done for bilateral hand cramping after rock climbing--which has not occurred recently and has now improved. The EMG results showed spontaneous IA ratings in all muscles tested (30 muscles total), and a 4 of the muscles had MUP...
  4. H

    My Story of ALS for 24 years now

    I was diagnosed with ALS on January 8, 2001. Was given 2-5 years to live. The doctors were concerned though that they could not find any muscle fasciculations anywhere on my body. I was referred to another doctor for their input. Her view on the EMG results were that she did not want to say...
  5. P

    Another study on gut microbiota abundance and short-chain fatty acid production in ALS

    Nature.com just posted this article examining the complex Interplay between gut microbiota abundance and short-chain fatty acid production in amyotrophic lateral sclerosis patients shortly after onset of disease. This study investigated differences in the enteral microbiome of early-stage...
  6. Nikki J

    PREVENT ALS New carrier study

    This is an arm of ALL ALS and will eventually have 35 sites. If you are in DIALS or Columbia families they will transition you and if you were traveling there may well be a closer site You don’t have to know your gene status if you are a close relative of a documented gene carrier affected...
  7. Nikki J

    ALL ALS now starting to recruit

    It is an observational study that will eventually have 35 sites. 7 are enrolling now. There is also an option for fully remote participation...
  8. Nikki J

    TBI and ALS/FTD

    https://academic.oup.com/brain/article-abstract/146/12/5139/7234911?redirectedFrom=fulltext&login=false
  9. lgelb

    Boston Children’s AAC Program seeks P/CALS input

    An introductory video explains the project’s goals — which include developing AI-enabled AAC to help PALS communicate in real time. The survey consists of 33 questions for PALS; 15 questions for caregivers/family; and 18 questions for clinicians.
  10. S

    Update: Finally saw a Neurologist - no ALS

    Hello All I posted twice about four months ago, see here (1st thread) and here (2nd thread, GP follow-up). About a week after I last posted I developed dysphagia, all of a sudden I aspirated saliva, water, coffee, but not food. I had to cough up saliva or drink that should have gone past the...
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