questions

  1. A

    questions about possible als

    sorry guys , have been having unsolved neuro issue for 10 months, now getting sent to mayo clinic in rochester in 2 weeks. So i have had musular twiching in toes (really arch of left foot) that causes my toes to move, then it moved to my left leg, then moved to left eye, mostly over last 8...
  2. M

    My father

    My father passed away last Wednesday surrounded by his family. Despite all the misery that ALS inflicted on his body, his last few days were very peaceful. His condition took a drastic downturn in November, after a couple of cycles on Edaravone. We will never know if this was a cause of his...
  3. L

    Radicava Ports and Infusion

    Good Morning, Posting on behalf of my cousin who has ALS. She's gotten approval for Radicava and is having a port put in on Friday to start treatment. She has some questions about the placement of the port, home infusions, etc. Anyone who has already started treatments and has any information to...
  4. LizF

    When simple stomach tube placement goes bad

    I'll keep this brief for those with reading challenges, feel free to ask questions in the comments if you like. I went into hospital on Dec 18 for a simple PEG placement. The doctor aborted the procedure as the light was not showing through my stomach, giving him a safe "landing site"...
  5. C

    1st Day Back

    Today is my first day back to work since my father passed and I am a mess. I don't know if I am ready for this. I miss the coccoon of safety of my home. Please pray that I make it through the day without too many people bombarding me with questions.
  6. A

    Màking hospice decision

    We met with a hospice provider yesterday and I am struggling with the decision to sign on. Really the only reason I am considering it is to get the morphine in the house to help with a peaceful pasśing, not that I'm ready for that quiet yet. I do not want to give up my neurologist and RT either...
  7. Cicipry

    In your opinion......?

    Age:27 Race: black or African American decent Current conditions: Gastritis Location : GA First, and foremost, I'd like to offer my prayers, and positive energy to those knowingly, and serious affected. I also realize you all answer so many questions, of the same nature, it can get old, and...
  8. L

    Trach question

    Today, the pulmonary Dr suggested we begin considering to trach or not. Since I'm so ignorant on this it is ez for me to ask dumb questions. Can a trach be shut off and a mask used for breathing for say an hour or so? Even 15 min? If so, I wouldn't need backup help while I walk the dog or...
  9. W

    Hand 'weakness possible early ALS symptoms

    Hey everyone 32 white female no outstanding medical history besides a recent csection for breech baby. About two weeks ago I was really tired/mildly depressed. I slept for most of 2-3 days straight besides to wake up and feed baby. When I would wake up I noticed some numbness is my hands, which...
  10. M

    Back again-still concerned

    Hi -Sorry to post yet again but I am still very concerned, my symptoms have persisted and I also have some new ones and looking for advice. I was not impressed with the first Neurologist I saw and she discharged me even though I had very real and visible symptoms, Stomach twitching (constantly)...
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