1. J

    Pretty scared. Another EMG upcoming

    Hello, My story begins in January or February of this year. My left foot would fall asleep very quickly and that leg was numb. I'd had a previous dvt and high d-dimer, but no clot was found in that leg on Feb 1. I began to have long periods where my heart would race and pound hard for no...
  2. K

    Research Study

    I lost my Dad, Jeff Long (who was active on this site), in October of 2015 to ALS. I am currently looking at the Infant Feeding Characteristics of Patients with ALS with the University of North Carolina at Chapel Hill. The information is listed on the National ALS Registry website...
  3. S

    Hoping to gain insight

    Hello to this site. First and foremost, I want to say to the people already dx'd that I mean no disrespect in visiting here for more information. I simply am worried to the point of losing my sanity and want help from those who know best. My symptoms began three months ago with numbness in my...
  4. Nikki J

    Liquid docusate warning!!!

    Please read if you are using this Colace is brand name. There are some combination products out there too CDC Warns of Multistate Outbreak of Burkholderia cepacia Infection
  5. M

    What Ventilator to choose? anyone have idea/experience abt "Microtak 920 Resgate" ?

    What Ventilator to choose? anyone have idea/experience abt "Microtak 920 Resgate" ? Hi, My mom was diagnosed with ALS on Dec, 2015. Recently she fainted & doc's told us that she has type 2 respiratory failure. She has undergone tracheostomy. A Bipap device is attached with the tube. She is...
  6. M

    None of this makes sense

    I am having yet another EMG on Friday to try to understand what is happening to my body. General feeling of not feeling well in Jan 2012. Lyme disease? Tested but not CDC positive. Start with Neurology in Sept 2012. Stiff neck and Fasciculations start in my left calf Sept 2012. EMG...
  7. Lilacs53

    MediciNova-MN-166/ALS Study

    Hi everyone, I received a email this morning from the CDC saying that a study is going to start on this drug called MediciNova-MN-166/ALS. The study is going to take place in Charlotte, NC., thought some from here who live near there might be interested. Here's a link that tells more about it...
  8. F

    Protein instability suggested as cause of ALS

    Protein instability suggested as cause of ALS - Medical News Today Protein instability suggested as cause of ALS A joint research team comprised of scientists from The Scripps Research Institute and Lawrence Berkeley National Laboratory - both in California - have suggested a cause of...
  9. S

    Long Unexplained Symptoms

    Good afternoon - First, I appreciate all of the time and effort and sacrifice all of you put into these forums. Thank you for all you do for those with this disease, raising awareness and supporting each other and yourself and your families. I've been dealing with some disconcerting symptoms...
  10. R

    US ALS Registry - First Data Published

    Here is the report -- And some comments -- ALS Advocacy: We Need To Talk! An Economist and pALS's Response to 'Prevalence of Amyotrophic Lateral Sclerosis --  United States, 2010-2011' | Stephen Finger ALS Advocacy: Who Are The 15 Percent?