Mom Has ALS/How Can I Get Tested 4 Genetic Link?

[chrismaya]

I'd like to do this, and wonder if anyone here has been tested in some way due to a close family member having ALS. I understand from what I've read that the test can give you a false "positive" hope, but I think I'd like to go for something. Thanks.

 

[lovelily]

Hello Chris...

So sorry that your mom has 'ALS'. I had some genetic testing, not related to this disease. I was sent to my primary care physician. He drew the blood and knew the mutation that was being looked for.

I think there are only a few laboratories who do these tests. I have the address for one.

Quest Diagnostics Nichols Institute
33608 Ortega Highway
San Juan Capistrano, California 92690

client service # 800 631 1390

I wish you the best....I will keep your mom in my prayers!

take care
lovelily

 

[DeeMichelle]

I'd like to do this, and wonder if anyone here has been tested in some way due to a close family member having ALS. I understand from what I've read that the test can give you a false "positive" hope, but I think I'd like to go for something. Thanks.

Hi
You can can get tested for SOD 1 which causes an hereditary form of ALS- however of the people who have FALS (the hereditary form) only 8-10% have SOD 1. So obviously it would be possible to have a genetic form that cannot currently be tested for having said that- MOST CASES ARE SPORADIC and the genetic form is very rare so if only 1 person in your family has had ALS it is more likely to be sporadic. Personally, coming from a family with FALS I would NOT get tested, though in fact my family do not have SOD 1 so I couldn't be tested even if I wanted to.
Wishing you the best...
Dee