Familia als

[Msnow27]

I was diagnosed with als early this year and since then have got much weaker. It all started in my legs but i can feel it through out my body and hands. I am 27 my father passed away 2 years ago and my uncle 9 years ago. Thought they took the bullet but i guess not. Not sure where or what to do but i hear of c9 test are there clinicals or any medication you have seen to help. Dont want to give up yet to young

 

[Nikki J]

You almost certainly do not have c9. Onset is said to be at 35 or older. There are other defects which are more likely. Ask for gene testing from your neuro. Also consider contacting Dr Siddique at Northwestern. He identified the gene that caused Anthony Carbajal's FALS which is young onset. And there are no gene specific treatments yet though some of us have theories

 

[Msnow27]

Thank you i have heard some good research and some hope comig from c9 but i will ask my dr. Do know how i could get in touch with this dr. Siddique at nw?

 

[Nikki J]

They have an ongoing gene study. Search on clinicaltrials dot gov under amyotrophic lateral sclerosis