C9 test

[emi82]

My mom was recommended to do the C9 DNA blood test. Since it was recommended from the neurologist at the clinic, we went ahead and did it because the doctor said that they were working on drugs for this specific mutation leading to ALS. After getting back the negative result, there was nothing more said to us about it (even though the test was so expensive). I just wanted to know if anyone else has heard of this test and have there been positive results.

 

[MaxEidswick]

>My mom was recommended to do the C9 DNA blood test

FWIW, I have never heard of it but my clinic has drawn enough blood to send Dracula on a binge. I will send them a note asking if this was a test they did ...

 

[Nikki J]

C9 is the most common gene defect in FALS in people of European descent. It is also found in a percentage of sporadic( random) patients. Many neuros are starting to test as there is much work being done and ho pe for the future. I am FALS and I have c9

 

[emi82]

Thank you so much for this helpful information - I was
reading upon it but was not sure if the test was necessary for my mom
or not but now it's good we did it.