1. J

    My symptoms, my fears

    Hello, first of all thank you for letting me join this forum. I’ve been dealing with some symptoms in the last month and I wanted to ask your opinnion about it. I’m 40. For some time I had some numbness in my hands, legs and upper lip so I had an appointment with neuro to see if something...
  2. K

    Trilogy Settings with Progression

    My PALS has been using a Trilogy for the past year. His latest FVC was 26%, with MIP at 20 and MEP at 32. We can tell his weakening muscles continue to affect his breathing, just since Clinic in February. He had some issues with air hunger at night and increasing EPAP from 6 to 8 took care of...
  3. S

    New caregiver

    So sad. Husband diagnosed end of December. He's very used to being in charge and making all the decisions. I am a RN/NP. So I know a bit about caregiving. He fights me on all the ways to do things. Slowly he is beginning to listen to me but it's frustrating. I only seem to cry when...
  4. T

    Symptom Questions from 35/m

    Hello, I hope you are well or as well as possible. Thank you for checking this thread and thank you for making this section of the forum. It must be very difficult for some members. Your patience for those of us with questions is greatly appreciated. I've refrained from ALS symptom-checking on...
  5. J

    How are you?

    How I hate that question now. It's become almost a default greeting. I know most people are trying to be kind by asking, but I honestly don't know how to answer anymore. I usually just say "We're OK" or "We're hanging in there". But honestly, we're not OK. And I'm sometimes just hanging...
  6. D

    Ear “throbbing”

    Left ear seems to be quite often “throbbing” a little. I have worn hearing aids for several years and have occasionally had this feeling, but not this often and for this long. Could this be ALS related? This kept me up for some time during the night. Could not get back to sleep for awhile.
  7. D

    Need To Get Up at Night to Potty

    Until last night I have been able to get out of bed to use a potty bucket. Last night I had to call my wife 2 times to get me up. I was able to get up a couple of times myself? I get up my using right arm an swing legs over side of bed. I don’t even want to go to bed tonight. I am a 77 YO...
  8. T

    tricks against fears and anxiety

    Dear all. I've been caught into a depression spiral lately. I'm quite stable symptomwise as for now but I'm taking a heavy beating mentally. The most challenging moments are dusk and mornings just after waking up. There creep the worst thoughts of any day: anger, 'why me', mediations about my...
  9. S

    Eighteen, concerned that I may have ALS/MND.

    First, let me start by saying that I am here due to symptoms that have been concerning me for almost month. They are new symptoms that have arisen from other symptoms that have been occurring for over three months now, starting at the end of November. It all started when I had two bowls of...
  10. L

    Anxiety and Corcern over recent symptoms

    First off I’d like to say thank you for the recent acceptance into the community, I have so much respect for all of you who are fighting this terrible disease. I want to start out by saying that I am a 26 year old male who has been healthy relatively my entire life. Lately I have been having...