1. 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:
  2. H

    Update 34yoM

    Hello all, This is my Previous post I had a follow up appointment yesterday (4/8/24) with neuroimmunology at MGH. Last appt was approximately 5 months ago on November ‘23. Despite mild symptom progression, repeat emg listed below of right upper and lower extremity was unremarkable. A mild...
  3. S

    Update: Went to the GP

    Initial request: Worried twitching was early ALS Dear all I know I should not post a second thread, please can you move my update into my initial thread above? I wanted to share the update that I went to see my GP or better he had the mercy to see me (he didn't want initially). He did a very...
  4. A

    Update for previous post … got a different diagnosis

    Good morning, I can’t add to my previous post, but I thought I’d add a separate update for anyone who’s googling furiously and had a similar experience. Briefly… My husband had sudden loss of dexterity in L hand in 2020 which progressed to some atrophy in the hand and forearm, then developed...
  5. lgelb

    Au8 update

    Here. The FDA has rejected Clene's Accelerated Approval application, however.
  6. W

    Update - New EMG, Lab results, and Symptoms

    Please see my earlier post below. EMG Results I will not press for assurance, merely hoping for insights/opinions and to give others a look at the process. Please merely delete this thread instead of blocking me if this poses any sort of rule break. So, I have some updates. On 10/25 I had my...
  7. S

    Update - met with a neurologist!

    Hello all, I posted a few months ago and I wanted to return to update everyone that responded to me. I met with a neurologist back in August who examined me and performed an NCS/EMG. He said I do not have ALS or any MND for that matter. He only did the EMG on one limb (my right leg that...
  8. lgelb

    Relyvrio update

    An update from Amylyx adapted from two Biopharma Dive articles: Approximately 3,800 PALS were taking Relyvrio at the end of June, Amylyx said in a conference call held Thursday to discuss the company’s second quarter earnings. That’s a step up from the estimated 3,000 patients who were on...
  9. N

    Update on New EMG Performed [Should I request a 2nd one on Bulbar Muscles?]

    Hello everyone, I had an EMG performed on Wednesday. The muscles tested: Hamstring Calf Muscle Thigh Some Hip Muscle (I forget the name) Anterior Deltoid Tricep Flexor Digitorum in my Hand Upper Trapezius Some muscle right around my Thoracic Spine (I forget the name) The EMG ostensibly came...
  10. T

    Update from my previous post

    Previous thread Questions and concerns I'm sorry I really didn't want to start a new thread but felt obligated to give the community an update. Not sure if you could unlock my previous thread or not but wanted to let folks know my MRI of my hip/leg showed labrum fraying/tear, .25in cyst, edema...