clinical

  1. J

    Brainstorm Nurown 'Right to Try' participant shares progress

    As some of you may know, Brainstorm granted one PALS free access to NurOwn as a 'thank you' for the work he did on Right to Try. He is not in a trial but is being given the course separately. His update is on Facebook -- matt.bellinski.7 Mod note -- not linking directly due to fundraising...
    • jaclyn
    • Thread
    • clinical family free fvc hope improvement lung capacity medical night nurown speech swallowing therapy treatment trial update work
    • Replies: 90
    • Forum: Research and trials
  2. C

    A Complicated Case

    Good afternoon. My name is John Marburger. I am 42, a retired Naval Officer and cancer survivor with some oddities at that go along with it. Apologies in advance for the length of this post and MANY thanks in advance for those of you reading or responding to it, especially those fighting this...
    • coinlieutenant
    • Thread
    • als autoimmune back bfs brain clinical cramping diagnosis early emg eyes family family history fasciculations holiday military mri neurologist pain progression stem cell story symptoms twitches twitching weakness
    • Replies: 4
    • Forum: Could this be ALS?
  3. E

    Balance issues

    Hello everybody, I have a question that I felt like couldn't be answered in the Stickies. For about 3 weeks I have had issues where I am walking, and if I do a quick turn on one leg, I stumble a bit. I have gotten out of bed at night to have my legs shake uncontrollably, or I stumble around the...
    • Ericalyn
    • Thread
    • als als? balance bed clinical denervation early emg familial familial als fasciculation issues military mri muscle muscle pain neurologist night pain progression symptom symptoms twitches twitching weakness work young
    • Replies: 23
    • Forum: Could this be ALS?
  4. P

    One week since diagnosis...

    My girlfriend was told that her symptoms are consistent with ALS a week ago at Mass General Hospital. As I stated in previous posts I have known for a while...and her dirty EMG sent us to Boston for the second opinion/confirmation. The first few days were spent crying/ holding her. She now...
    • pfd161
    • Thread
    • age als ankle boston clinical crying diagnosis dirty emg emg info riluzole second opinion symptoms walker what to do next?
    • Replies: 8
    • Forum: Newly diagnosed
  5. K

    FVC at diagnosis and progression rate

    My mom’s FVC was 50% during her initial respiratory evaluation at the ALS Clinic at Mayo. Because of this, she is not a candidate for any clinical trials. She will be receiving a cough assist and trilogy. Does her diminished pulmonary function indicate ALS progression is aggressive? She is...
    • Kellbellab
    • Thread
    • als bulbar bulbar onset candida clinic clinical cough assist diagnosis fvc onset progression respiratory trilogy
    • Replies: 2
    • Forum: Newly diagnosed
  6. A

    Question

    Thank you to everyone on here who donates their precious time to answering questions from strangers on the internet. I’ve read the stickies, and a significant amount of posts on here (and am moved by your patience and compassion). My question is: in your collective experience, whether personal...
    • Alvin10023
    • Thread
    • als atrophy clinical diagnosed muscle muscle twitching onset questions symptom twitching weakness
    • Replies: 11
    • Forum: Could this be ALS?
  7. D

    Strange symptoms

    Hi guys, I hope everyone is doing okay today. Since last September I have had extremely strange symptoms which have progressed. At the end of September 2018 I had a sudden onset of left muscle weakness and left arm muscle weakness. It wasn't gradual just happened one day. There was no less of...
    • Deedree96
    • Thread
    • ability advice age als arm back balance burning clinical emg emg? fatigue hope mri muscle neurologist onset pain scared spasms symptom symptoms test twitch twitches weakness
    • Replies: 0
    • Forum: Could this be ALS?
  8. T

    Clinic Visit Tom...feeling nervous.

    Tomorrow we are headed to our 2nd clinic visit -- I am sad and on edge today. Is it because we are facing clinical tomorrow? It's so hard to try and have a "normal" day . We have been living with this dx for almost 2 mos. I think the shock is finally gone - perhaps reality is just setting in...
  9. S

    Edaravone feedback on its effectiveness

    Hi first time on this forum. Seamus from Ireland diagnosed1year but symptoms about 4 years, 49 married 4 kids. What I would like to ask people is about Edaravone. It has been in use in the US since 2017. It is not available in Europe yet but there is a large clinical trial this year on the oral...
    • SEAMUS
    • Thread
    • back clinical clinical trial diagnosed early edaravone helpful holiday increase info kids symptoms trial work
    • Replies: 17
    • Forum: General discussion about ALS/MND
  10. E

    On a PLS rating-scale and clinical trials

    Here is an interesting video: https://vimeo.com/278845845
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