genetic testing

  1. C

    Familial ALS group?

    My grandfather died of ALS and my mother has ALS and has had genetic testing and found a gene.... I've read that there is a Familial ALS group on this website, but I can't seem to find it. Can anyone point me in the right direction?
  2. Nighthawk

    Why ALS drugs tested on mice won't work on PALS.

    Found this very interesting post by someone at ALS-TDI Forums and wanted to share it so we can better understand the stagnation on ALS Research on finding a drug to cure this disease or, at least to stop its progression. The reason, the failed approach of testing drugs on mice instead on PALS...
    • Nighthawk
    • Thread
    • age als als research cure data drugs enzymes fals familial familial als food genetic testing hope mnd onset pals pressure progression research sod1 sporadic stress symptom testing wanted work
    • Replies: 5
    • Forum: General discussion about ALS/MND
  3. K

    Options for genetic testing? And paying for it?

    Hi all, Haven't posted for awhile and so much has changed. My (future) MIL has declined rapidly since Christmas Eve and is now at the Hospice Care Center. They think she likely only has days left. The hurt we are experiencing cannot be put into words and I have honestly been so emotionally...
  4. K

    If you could improve one thing about ALS...

    Hi all, I am brand new to this forum. Happy this forum exists, not to happy to need it : / My mother in law (MIL from here on out) was just diagnosed with bulbar onset (probably familial) ALS about a week and a half ago although they have been suspecting it for awhile. My husband and I are her...
    • kaylseyum
    • Thread
    • als als? bulbar bulbar onset caregivers caregiving diagnosed diagnosis familial genetic genetic testing hope hospice information insurance introduction life onset testing
    • Replies: 16
    • Forum: General discussion about ALS/MND
  5. S

    New Member, Read Stickies, 2 Family Members with ALS

    Hello to the kind answerers. I've read as much as I can of the stickies and advice as I can. I have some questions about ALS in the context of my significant other (SO) and I provide the family background of why I am here, as I wouldn't be here without the familial ALS. Background: my SO and...
    • SZcat
    • Thread
    • advice als als? brother diagnosed emg familial familial als family family history father genetic genetic testing muscle muscle weakness neurologist new member progression questions reading rilutek surgery symptoms testing weakness
    • Replies: 4
    • Forum: Could this be ALS?
  6. W

    Waiting for answers.

    I’ve been reading the forum for about a month now. I just became a member last week. This is my first post. I am thankful for all the helpful information out there. I have read the stickies. It started about 5 months ago with my husband (age 42) asking me if his arms look smaller. I honestly...
    • Waiting
    • Thread
    • age als anxiety atrophy back ball biopsy bulbar diagnosed diagnosis early emg female frustrated genetic genetic testing helpful hope hours ice information insurance mri muscle muscle biopsy muscles neurologist pain problem problems reading scared testing treatment twitching wanted work wrong
    • Replies: 20
    • Forum: Could this be ALS?
  7. S

    Just wondering.....

    Hello everyone. I joined this forum a few months ago as my aunt had als (bulbar onset) and I found it to be a great source of reliable information. I'm now on to ask for your opinion on something. My aunt was diagnosed at the age of 68 in May last year, sadly she passed away in February of...
    • scotslassie
    • Thread
    • age als brother bulbar bulbar onset death diagnosed diagnosis family foot foot drop genetic genetic testing information mnd muscle muscle weakness onset sleep testing wanted weakness wheelchair wrong young
    • Replies: 3
    • Forum: General discussion about ALS/MND
  8. R

    Fals

    My ex husbands mother died of ALS in 2003 and a few years ago I found out that my ex husbands brother was diagnosed with ALS as too. When I heard the news, I really thought that he was misdiagnosed. He's only 43 years old and I was in total denial. Having said that, communication has not been...
    • ruby36
    • Thread
    • als brother communication denial diagnosed fals familial family genetic genetic testing research support testing
    • Replies: 8
    • Forum: General discussion about ALS/MND
  9. J

    Information needed on Familial ALS

    Hello, I'm new and would like to thank you in advance for any information you can offer. I've just become aware of the following information and am trying to determine what the chances are that we have a familial form of ALS in the family. My paternal grandmother became ill at the age of...
    • Jane1234
    • Thread
    • age als children death diagnosed familial familial als family father female genetic genetic testing information running sod1 testing
    • Replies: 3
    • Forum: General discussion about ALS/MND
  10. J

    ALS and Nemaline Rod Myopathy

    Dear All, My son, aged, 12, has mild Nemaline Rod Myopathy and my mother recently last month from ALS. My uncle has inclusion body myostatis. I am wondering whether anyone else has these diseases in their family. It seems so freaky that we have these three diseases. We are going to begin...
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