AdBlock Detected

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience and to help support our community please take a moment to disable your AdBlocker.

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

Status
Not open for further replies.

chrismaya

Active member
Joined
May 23, 2008
Messages
44
Reason
Loved one DX
Country
US
State
NJ
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

Distinguished member
Joined
Nov 27, 2007
Messages
390
Country
US
State
NJ
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

Distinguished member
Joined
Mar 20, 2008
Messages
118
Reason
Lost a loved one
Country
UK
State
Hertfordshire
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
 
Status
Not open for further replies.
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

I've Disabled AdBlock