genetic testing

  1. Paul Wicks

    New genetic education, counseling, and support program - Light the Way

    Hi everyone, I've been an ALS researcher for 22 years (working on things like cognition, depression, PatientsLikeMe, ALS Untangled, wikipedia, clinical trials) and a caregiver for 11 years to my father in law who was diagnosed with a slowly progressive form of ALS and is currently in an...
  2. K

    Genetic Testing

    I had a previous thread on here, but couldn't post on it as it won't allow new comments. (added by mod: Myopathic EMG and Neurogenic Biopsy ) Have been seeing Neuro since Feb 2023 on multiple issues that was explained in previous post. Several months ago my symptoms have progressed to...
  3. Nikki J

    Webinar on new genetic testing guidelines

    By the Les Turner learning series. It is under the education tab at Lesturner dot org. I have heard the presenter before and she has been an author on papers for this topic. Genetic testing is becoming more widespread these days but I don’t think it is offered by all clinicians
  4. M

    Question about genetic testing

    Someone told me her father died of ALS. Then she said that if she wanted to know if she has inherited the potential to develop ALS, she would have to be tested annually. I had genetic counseling and then a cheek swab (waiting on results). If it shows a genetic cause, then the counselor, my...
  5. M

    Genetic Testing

    Hi there, My family has been burdened with C9 - we’ve lost 6 amazing people in 2 generations, so far, including my mom, Godfather, and Gramma. I’ve struggled with anxiety over this disease for over a decade now. The anxiety presents itself in the form of symptoms and I trick myself into...
  6. V

    Husband is a possible carrier of c9 gene - anxiety over symptoms.

    Hi Everyone, My husband is 35 years old and has lost a cousin, an aunt, 2 uncles, (all to ALS) and currently watches his mom battle the final stages of ALS. His family carries the c9 gene. Upon visiting with his mom over Christmas (they live out of state) and spending a week surrounded by ALS...
  7. T

    Familial ALS continued

    Hello- For the backstory on this thread, please see the original Familial ALS posting. Perhaps a moderator can combine these two? We have received the gentetic testing results from my husbands brother, who had ALS-like neuromuscular degeneration combined with a family tree with many ALS and...
  8. S

    Genetic testing??

    My husband was dx. In dec. 18 we have very little past family history due to the fact that his maternal grandfather was adopted with no records and his paternal family have all died at young ages ( under 50) except for his father as of now who is 48. Reed is 28 and I am just curious if we...
  9. E

    Genetic testing

    Hello, We are wondering whether to do genetic testing... There have been no more known cases of ALS in our family, apart from my recently diagnosed father. However, a cousin of my dad had MSA and another cousin is now being seen by neurologists with suspected Parkinson's disease. On the other...
  10. E

    My story

    Hello, I want to share with you our story in full. There are bits and pieces all over the forum, but I wanted to gather everything together. My father received a final diagnosis of MND yesterday. My father (60) started experiencing symptoms quite a while ago, around the winter of 2016. He...