support

  1. A

    family diagnosed. very scared

    hi everyone. i'm writing this with tears in my eyes and i'm reaching out for support. a family member was just diagnosed. i'm terrified, scared, in denial. i don't understand what is going on and i keep breaking out into sobs as i walk down the street. do you recommend a second opinion? what...
    • anor
    • Thread
    • cell denial diagnosed eyes family family member please help radicava scared second opinion stem cell stem cell therapy support therapy
    • Replies: 7
    • Forum: Newly diagnosed
  2. T

    New to this forum

    I registered-joined this forum today after researching several other sites because I felt that it was genuine and informative. My 57 year old twin brother was recently diagnosed w/ ALS at Duke University. He was told that the degree of certainty is >90%. He had an appt. in Knoxville w/ a...
    • Tlo57
    • Thread
    • 2nd opinion als angry brother cramping diagnosed family fatigue foot life love meds military support swallow tests wanted wrong
    • Replies: 20
    • Forum: General discussion about ALS/MND
  3. B

    Abnormal EMG, no clear diagnosis, looking for emotional support

    This thread is not about asking whether I have ALS. After this past week, I've started to accept that I probably do. But I'm looking for emotional support going forward. My symptoms started in April with unexplained muscle soreness in my right bicep and thumb. I saw a neurologist: no weakness...
    • bsonrisa
    • Thread
    • abdomen abdominal advice als arm back clean emg cramps depressed diagnosis early emg fasciculations hours movement muscle muscles neurologist pain problem research support symptoms test thenar thumb weakness
    • Replies: 19
    • Forum: Could this be ALS?
  4. R

    Life update

    Hi everyone, I haven't posted on this forum in over a year now and I've been missing it in my life! My dad was diagnosed with ALS 2 years ago (age 57), and it was around mid-last year that I discovered this forum. It allowed me to connect with people also affected by the disease, who understood...
    • RSV Aus
    • Thread
    • advice age als back breathing dad diagnosed early family feeding food happiness heart hope life reading sleep stages support swallowing transfers trip update wheelchair
    • Replies: 8
    • Forum: Current caregivers
  5. D

    Anyone started on Radivica yet? Use this thread to discuss access/ insurance

    Trying to get an idea of when we can expect to start- we have prescription and are in contact with their customer support but I was wondering if anyone here has first hand experience with it now that it's approved and available.
  6. M

    ALS Symptoms. Why you (MOST LIKELY) don't have ALS.

    Introduction Like you, I was in this forum worried sick I had ALS, Heck! Not only that! I was 1000% certain I had ALS, there was not a doubt in my mind my days were numbered. I had stopped any plans whatsoever for the future because I was certain I would be on a wheelchair watching my days go...
    • mickeybr
    • Thread
    • als bfs bulbar bulbar onset cramping cramps emg eyes lead lift mad medicine muscle neurologist sleep stiffness stupid support swallowing symptoms test twitches twitching weakness wheelchair wrong
    • Replies: 1
    • Forum: Could this be ALS?
  7. J

    Cognitive changes/Advice

    My PALS, bulbar onset, diagnosed last December has been steadily declining both physically and cognitively. Back in April we enrolled in the LEFFTDS study at the Mayo Clinic because there was a possibility that he had familial ALS due to C9 gene mutation. As part of the study he did have a...
    • Jennanne
    • Thread
    • advice angry back brain bulbar bulbar onset clinic diagnosed familial familial als family frustrated genetic genetic testing heart helpful kids mri neurologist onset questions support testing work worried
    • Replies: 7
    • Forum: General discussion about ALS/MND
  8. L

    New Mom Searching for Answers

    Hi everyone, This has been a hurry up and wait process and I'm searching for support. I delivered a baby girl via c section 3 months ago. She is my second baby. My first night in the hospital I noticed my forehead muscle spasming. Thinking it was due to stress, I put it off. I was having what...
    • Linlew
    • Thread
    • advice anxiety dying family muscle night please help me stress support twitching
    • Replies: 4
    • Forum: Could this be ALS?
  9. P

    Friend diagnosed and is isolating :(

    Hello....A close friend has been diagnosed with bulbar ALS 4/2016. She has a wonderful husband, 2 parents close by, & 3 young adult children. One still in HS with my children. She & her family have kept her diagnosis private. She spoke to me about it July 2016. I have been honoring her...
  10. J

    My love is gone

    Jay passed on August 9th while in hospice at the hospital. His breathing starting getting bad the week before. He never had any trouble breathing until August 1st. My heart breaks that he didn't pass at home where I always told him he would be. But on August 4th I woke up to realize that he...
    • jayswife
    • Thread
    • breathing heart hospice love morphine night pressure support
    • Replies: 17
    • Forum: In memory of
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