1. A

    I have to rule out ALS

    My story starts in Feb 2018. During an xray for shoulder pain they discovered my left diaphragm was elevated, but they didn't bother to tell me. They gave me painkillers for shoulder bursitis. I complained to my PCP in Sep 20108 of constipation. She ordered an abdominal CT scan that showed...
  2. Kristina1

    frightened by another post

    The post in general forum about eye lid surgery frightened me. I was under the impression that all or vast majority of pals can use eye gaze communication indefinitely despite body becoming fully paralyzed. At this stage in my disease my feelings are that I want to continue to live for as long...
  3. D

    Compensation and Pension (C&P) exam for an increase SMC payment

    Veterans with ALS need to know that in order to get their special monthly compensation (SMC) increased as their condition worsens they will need to get a Disability Benefits Questionnaire (DBQ) filled out by a doctor of your choice or submit for a C&P exam arranged by the VA. My recent...
  4. D

    Veterans with ALS need to do these things

    I would tell all veterans that deal with the VA and have been diagnosed with ALS to do the following. 1. Get with the Paralyzed Veterans Association (PVA). Let the PVA fight the VA for you. When I was diagnosed with ALS at the Mayo Clinic in Jacksonville, FL the ALS Association...
  5. 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...
  6. N

    The Only working hand getting very stiff

    Hi first time on a forem my sister has MND/ALS. Was 3 years diagnosed last October. Her only remaiing limb that works is her right hand, she has no arm movement just her hand, her fingers are so stiff, she can hardly move them . her breathing is very shallow, we use cough assist machine every...
  7. L

    When to stop using hoyer and stay in bed?

    My 80 year old mother in law is now entering what we believe are the final stages of the disease. She is almost completely paralyzed from the neck down and needs the bipap 24 hours a day. No trach or stomach tube. Her voice is relatively strong, however, and we have done the maximum to give...
  8. C


    I have been getting paralyzed from the waist down on and off for about two weeks. This morning around 9 i did again but it hasnt went away. Its been over 6 hours and i have not got any feeling back. Has this happened to anyone else? If so how will i know its permanent?
  9. Y

    Breathing issues prompting move to skilled care facility. We're scared!

    Hey all, Have only posted once or twice before. I'm the caregiver for my partner, Mike, who has been diagnosed since August 2011. He uses a power chair and a feeding tube (although he's fortunately still able to enjoy a beer every night), a sip and puff respirator as he needs, and we use a...
  10. I

    1 year of bodywide twitching and new symptoms

    Hello everyone, I'm experiencing bodywide fasciculations for a year now and I've been told on the BFS Facebook group that my symptoms no longer quiet sound like BFS. I was almost kicked out of the group because I was causing anxiety, What caused that type of reaction? I'll try to explain it...