update

  1. steve913

    ALS early symptom and progress update

    See UT San Antonio this Monday 16th, hopefully care team will be put in place Initial symptoms late oct 2024 left drop foot confirmatory ALS diagnosis May 2 Mayo clinic Still using walker What Ive done in last several weeks: 1 Installed 21 inch high toilet with Bidet system in master...
  2. steve913

    Atypical slow progession ALS , search for caregiver, meds update

    My symptoms started with left drop back in nov 2024 , i posted my story under newly diagnosed. I use a walker since late february 2025. i feel fatigue and unbalanced and am losing grip strength on left side. Who determines if you have slower progression Als ? Im assuming your care team at ALS...
  3. 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...
  4. 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...
  5. 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...
  6. 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. ;)
  7. 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...
  8. 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...
  9. 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...
  10. 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...
Back
Top