family

  1. 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
  2. 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?
  3. 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...
  4. N

    My Father

    Hi All, My father passed away on 8th Aug 2017 from ALS. I am writing this for others who may find our experience helpful. We live in Mumbai, India. My father showed symptoms for ALS since Feb 2016. Initial symptoms included weight loss, weakness, lethargy (especially in the morning) and...
    • niravshah81
    • Thread
    • als bipap breathing diagnose early family father goodbye health helpful hours information mnd morphine night onset oxygen sleep swallowing symptoms tests travel ventilator weakness weight loss work
    • Replies: 9
    • Forum: In memory of
  5. M

    Concerned...

    Hi Everybody, I just don't want to have long threads or ask multiple questions, wanted to check if the following scenario would be a chance of ALS or not ... I me :( Since 1 month and ~ 1 week I notice fasciculation in my calves and when I run or workout or randomly some very very mild cramps...
    • mihu
    • Thread
    • als ankle arm clinical concerned cramps dad eye family family history fasciculation genetic go away hearing ice mnd mri muscle neurologist nose pain questions sporadic test tongue twitches wanted weakness
    • Replies: 54
    • Forum: Could this be ALS?
  6. Tedstehr

    Sad to be here, happy to know you are here

    In January, I went for a walk when I was in Chicago for work. I was alarmed to feel my right foot drop as I walked. Nowhere in my imagination did I think it would be ALS. I got a neurologist appointment and he did some tests and sent me for first a neck and then head MRI. The report stated that...
    • Tedstehr
    • Thread
    • als children clinic emg family foot foot drop heart immediately kids life love mri neurologist sad support symptoms tests work young
    • Replies: 22
    • Forum: New members
  7. T

    Is it familial ALS?

    Hey everyboody, I hope you've a good day. I'm from Vienna so please excuse some spelling mistakes. It's about 1 month ago when my grandfather was diagnosed with ALS at about 79 years. His neurologist said it is an exclusion diagnosis because he can't pronounce a word and it might be bulbar...
    • themichi001
    • Thread
    • als als? back bulbar bulbar als dad diagnosed diagnosis familial familial als family fasciculations hope life neurologist problems scared symptom
    • Replies: 5
    • Forum: Could this be ALS?
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