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Leslie

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Joined
May 12, 2006
Messages
14
Reason
Loved one DX
Country
US
State
GA
City
Atlanta
Well, some scary news yesterday. What my family thought was spontaneous ALS (dad has bulbar'05) has now become FALS with the diagnosis of his 1st cousin. They both go to the same ALS specialist and I talked to him today and he has confirmed the diagnosis. Apparently my dad's preceeding generation may have been "obligate carriers" meaning that none of them expressed the gene. However, the cousin that just got diagnosed, his father died several years ago from "complications of Parkinson's disease"- this may have been misdiagnosed ALS (per the doctor).

Our family is in shock to say the least. My question is to any FALS patients/families out there: opinions/experience with genetic testing, etc. research studies, resources for families with the FALS history. Just any information on this super small population.

Thank you, Leslie
 
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