1. J

    Multiple symptoms for months

    Well for starters I found this website in a state of my panic and have read others threads about similar symptoms in a search for reassurance. I have been very apprehensive about posting here because I know a lot of people are probably just overexcited or scared and have convinced themselves...
  2. E

    Just a short question about mri

    Previous thread Sorry to disturb again. I have hypothyrodism, vitamin d and b12 deficiencies. Its been over a month since i started the treatments but i dont feel much different. Maybe more time is required or im not patient, i honesty dont know. I feel like i have a swollen tongue (edges...
  3. Doglady

    Microsoft supported Research - Answer ALS

    Thought this was an interesting article about a research project called "Answer ALS" where PALS can help to collect clinical, genetic, behavioral, molecular and biochemical data on people living with ALS. Using artificial intelligence and machine learning, researchers plan to analyze the data to...
  4. N

    cold or flu with ALS is terrible!

    this is the second time this year I've been down and out. The worst part is the breathing is extremely strained. that is nothing new and I have never used bipap or trilogy. I'm getting antibiotics tonight and so far my regimen is Musinex, breathing treatments with the mask and smoke stuff...
  5. D

    Medication - Newly Diagnosed In September

    One option given at my first ALS Clinic visit yesterday was Radicava infusion treatments. Comment and/or experience with the process please. If I do these treatments I will not be eligible for a couple of trials they are doing at the ALS Clinic.
  6. BlsdMama

    And I'm back...

    Not without a fuss, mind you. Mayo found an antibody (glycine receptor antibody) and wanted to try several treatments for limb variant stiff person syndrome. Alas, nope. I felt the fourth trial improved my balance (quite a lot actually) but they can see no improvement, plus, everything has...
  7. L


    My PALS aspirated his yogurt a few days ago. This is our first trip to the ER because of this. They are doing breathing treatments and suction every four hours. Doing IV antibiotics. SATS staying around 90 until last night when he wouldn’t use his bipap and he was in the 80’s. My daughter came...
  8. C

    Please share your experience at ALS clinic - very frustrated!

    Hi all! We’ve only been to our ALS clinic once to meet neurologist and clinic nurse which was two weeks ago. During the visit we inquired about a couple trials my Dad may be interested in as well as treatments Riluzole and Edaravone. The Neurologist and Nurse said they could give us no advise...
  9. T

    Question about life if a cure is ever found.

    It's been a while since I have checked in. Life for my son and myself, as caregivers, is almost unbearable. My PALS is totally paralyzed from neck down. He has a feeding tube and is on a ventilator. He seems a little more depressed lately. Still doesn't sleep well at night so my son and I...
  10. B

    New Imaging Protocol Could Vastly Accelerate Clinical Trials for New ALS Treatments

    Accelerated, smaller clinical trials are in the horizon.