genetic testing

  1. Maoko

    How to tell teenagers?

    Hello everyone, I 'm french, my father died of als in 2015, he had done genetic testing but the results went after his death and then nobody told us anything. We all assume that it was sporadic. Then, in 2016 my sister went under a IVF procedure and needed the results, bingo: c9orf72. At this...
    • Maoko
    • Thread
    • als children cramps death fasciculation father genetic genetic testing kids neurologist risk sporadic testing tongue young
    • Replies: 2
    • Forum: Familial ALS (FALS)
  2. M

    Should I be concerned?

    Hi everyone - I am seeing my primary care doctor tomorrow but wanted to get your opinion on my situation seeing as you have so much experience in this area. My uncle passed away in Spring 2017 from ALS (he was late 60s) and my dad was just diagnosed with ALS (he is 74). I'm considering getting...
    • Maureen9213
    • Thread
    • als concerned dad diagnosed familial familial als feeding finger genetic genetic testing shaking symptoms testing wanted
    • Replies: 3
    • Forum: Could this be ALS?
  3. T

    Familial ALS

    Thank you for adding me/us to the forum. In brief, here is our story: My husband lost his mother to ALS when she was 59 years old. She had one aunt, one uncle, and two first cousins who also passed from ALS. There were a couple other family members who may or may not have had early signs, but...
    • Tkhalaska
    • Thread
    • ability advice als denial diagnosis drug trials early familial familial als family feeding feeding tube genetic genetic testing lead research respiratory story swallow symptoms testing trach ventilator weakness wheelchair
    • Replies: 17
    • Forum: Familial ALS (FALS)
  4. K

    FIG4/ALS11 mutation

    I'm going to try to keep this short and start by saying I'm actively trying to get into a neuro at the local hospital that deals with neurodegenerative diseases. Through genetic testing (legit, medical testing done by a Dr.) I was found to have a mutation of the FIG4/ALS11/Sac3 gene. It's...
    • Kippy
    • Thread
    • als als? cmt diagnosed genetic genetic testing medical testing
    • Replies: 4
    • Forum: Could this be ALS?
  5. V

    Familial ALS ruled out?

    Hello, I am new here, so please bear with me if I break any rules, and feel free to delete this thread. My grandfather passsed away aged ~65 from ALS after having been ill for 4 years. His brother still suffers from ALS, but he was diagnosed much earlier, almost 20 years ago. His illness moves...
    • v6a5
    • Thread
    • als als? anxiety back brother diagnosed familial familial als family free genetic genetic testing new here testing worry
    • Replies: 5
    • Forum: Familial ALS (FALS)
  6. MJALSWarrior

    Determining Familial ALS

    I was recently diagnosed with Onset Bulbar ALS. The question came up about history and I told the Neuro that my grandfather, a cousin and 2 of my grandfathers nieces had it. My understanding is that to connect it as familial my grandfather would have had to had a genetics test for them to be...
    • MJALSWarrior
    • Thread
    • als bulbar bulbar als diagnosed familial familial als genetic testing info onset reading test testing
    • Replies: 4
    • Forum: Familial ALS (FALS)
  7. T

    Familial ALS?

    Hi all, Thank you so much for taking time to read and respond. I️ really appreciate it and all this forum does. I have a question about familial als. My mother in law passed away from als at 57 after a 6 year battle with bulbar als. At the time it was determined that hers was sporadic. For...
    • Taylorusa
    • Thread
    • als als? bulbar bulbar als dementia early familial familial als family ftd genetic genetic testing kids sporadic testing
    • Replies: 4
    • Forum: Familial ALS (FALS)
  8. worrieddaughter77

    Questions to doctors during second ALS clinic visit.

    My dad has been diagnosed with "MND likely ALS " a month ago in North Western University hospital in Chicago. In 4 days we are going to his second ALS clinic visit. During our last visit, i was too overwhelmed and unprepared to ask questions, but i want to make sure i am all of the important...
    • worrieddaughter77
    • Thread
    • als als clinic brain breathing clinic dad diagnosed drug trials genetic genetic testing mnd myasthenia gravis peg progression questions radicava rilutek stress supplements testing wes
    • Replies: 12
    • Forum: Current caregivers
  9. O

    Genetic Testing

    I've asked this question before but want to see if anyone has new information. When I was going through the diagnostic process, the neuro I was seeing suggested genetic testing through the Athena Lab in the Boston area. (Think this lab has a new name now) The cost was about $35,000, so it was...
    • old dog
    • Thread
    • age als bedridden boston cost dementia diagnosis family family history father genetic genetic testing information pls story symptoms testing voice wanted work
    • Replies: 7
    • Forum: Primary lateral sclerosis
  10. 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
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