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kaylseyum

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Joined
Oct 17, 2012
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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?
 
There is a familial ALS group on F B. Are you a member
 
I'm in a family registry through a research hospital. I strongly believe that someday doctors will figure out how to break into the genetic code and delete the nasty gene that causes this. I think it must be a gene that triggers als to start in all of us. It's my hope that this happens soon. It won't help me, but all future generations will benefit.
 
there are a couple of clinical trials for fals families. UMass does not tell you the results but there are also trials at Northwestern and UMiami

Northwestern told me they were no longer testing asymptomatic family members as they had a backlog but it might be worthwhile contacting them to see if they would test your MIL (you can mail in blood smaple)

UMiami has a study for asymptomatic family members and I have been told they would give results That would not completely clear yout fiance of course since you don't know if there is an identified gene. They are also VERY hard to get hold of They never returned my call and it took 4 months and multiple emails to get a response. in October there was a 4 month waiting list. But it might be worthwhile trying them I don't know if they would want to test a sample of your MIL as well. Our family gene has been identified so my situation is different than yours took for clinical trials at clinical trials dot gov
Also you can choose to come off hospice temporarily. could your MIL come off for a day get the test done and go back on?\And if you are on FB come join the fals group!

I am so sorry FALS is so hard. It is bad enough to have to deal with ALS without having to worry about the rest of the family
good luck
 
While this may not help your current situation, I believe that UMass and /or Mass General collect blood samples from PALS for research database purposes... If you're interested, I'll try to find the info I may have on it.

Sorry about your MIL, hope you all are at peace when her moment comes...
 
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