update

  1. M

    Problems with the Esophagus – Update

    Hello again, My previous thread is here: Pain in the esophagus, lump in the throat I hope you’ll allow me to share a small update, though unfortunately, things haven’t improved. (I’m not sure if I can update this thread; I have no intention of breaking the rules, but my previous thread...
  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. Nikki J

    CNM-Au8 update

    The company is going for accelerated approval and the fda is looking for nfl and survival data as well as more data on target engagement. All very reasonable. In the meantime Clene is proceeding with a phase 3 trial to start in the new year. It would be a confirmatory trial if they did get...
  4. David

    Important Community Software Update - December 9, 2024 (v2.3.4)

    If anyone notices any bugs, or broken systems after this mornings update, please take a moment to post them here. ;)
  5. H

    Update after 2 years

    I had an original thread but cannot find it. This was 3rd here I was reassured until i spoke to Genetic Counselor (Prior posts- 1st thread, 2nd thread) Today I am only worse. My left arm is much weaker than even 2 months ago, although I think it still wouldn't be clinical Twitching began sep...
  6. H

    Update

    Update….. finally met with my neurologist today after my last EMG. ( which was done at the 7 month mark of symptoms) My clinical was normal today. This is now going on 10 months of symptoms. He said most likely by now if it was something like als we would see signs on clinical. I continue to...
  7. 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...
  8. L

    Update and progression of symptoms.

    Hello everyone I already posted several months ago and I always thank the members of this group for taking the trouble to reply. I am almost 22 months since the onset of symptoms and my symptoms continue to progress. I've had 3 emg's including the last one a year ago now. I was 10 months after...
  9. Clearwater AL

    Update...

    There hasn’t been much going on this sub-forum from PALS. My progression has taken an upswing starting a couple months ago. So here goes from me. I took it as far as I could go… the power wheel chair is on its way. The bathroom remodel is in the works, the outdoor ramp follows. I took the...
  10. lgelb

    ACT for ALS update meeting

    On March 8, participants from C-Path, FDA and NIH provided updates on rare neurodegenerative disease activities, with a focus on ALS. The stream:
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