kaylseyum
Member
- Joined
- Oct 17, 2012
- Messages
- 12
- Reason
- CALS
- Country
- US
- State
- WA
- City
- Near Seattle
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 and physical burnt out lately, I am too exhausted to try. Her mother had ALS, as did her maternal grandfather so the family link is very strong. I have been fighting insurance for 3 months to get a genetic test approved but alas, now that she is on hospice, they won't pay for it (you can't receive medical care and hospice care at the same time). So, I am wondering if people have options for getting her blood tested if we have it drawn by the hospice nurses (who say they will draw blood).
While it is a moot point for my MIL at this point, knowing the genetic status of her would help make genetic testing of my fiance more clear. Without her genetic data, a negative result for my fiance wouldn't tell us much because only 50% of genetic cases can be identified by testing so a negative test could mean a) he is not a carrier or b)he is a carrier of a gene not yet identified. These results would greatly affect how (and if) we choose to have children.
I know that I can send blood to a company called Athena Diagnostics and they will run a full panel for $9,375 (YIKES!). However, they can hold the DNA for up to two years so we could work on raising money or something in the mean time.
Does anyone know of any other companies who do the testing? Most sites I read quote the price of the full panel (testing for 4 genes) around $1,500-$4,000 but don't list any companies so I am wondering if there is a cheaper option out there?
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 and physical burnt out lately, I am too exhausted to try. Her mother had ALS, as did her maternal grandfather so the family link is very strong. I have been fighting insurance for 3 months to get a genetic test approved but alas, now that she is on hospice, they won't pay for it (you can't receive medical care and hospice care at the same time). So, I am wondering if people have options for getting her blood tested if we have it drawn by the hospice nurses (who say they will draw blood).
While it is a moot point for my MIL at this point, knowing the genetic status of her would help make genetic testing of my fiance more clear. Without her genetic data, a negative result for my fiance wouldn't tell us much because only 50% of genetic cases can be identified by testing so a negative test could mean a) he is not a carrier or b)he is a carrier of a gene not yet identified. These results would greatly affect how (and if) we choose to have children.
I know that I can send blood to a company called Athena Diagnostics and they will run a full panel for $9,375 (YIKES!). However, they can hold the DNA for up to two years so we could work on raising money or something in the mean time.
Does anyone know of any other companies who do the testing? Most sites I read quote the price of the full panel (testing for 4 genes) around $1,500-$4,000 but don't list any companies so I am wondering if there is a cheaper option out there?