Familia ALS and genetic testing

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wrestlingmom318

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Joined
Apr 15, 2024
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Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
NJ
City
Bloomsbury
My mother passed 4/2013. She was diagnosed at 64 and lived for 5 years. I am now 53. I’m experiencing weakness in the right side of my body. I want to get tested for the gene. Anyone know if insurance is covering that these days? I am also looking for a new primary care physician as I don’t think my previous Dr took my ALS concerns seriously. Thoughts? Advice?
 
If you are experiencing symptoms that worry you you need to see a doctor. Genetic testing even if positive will not diagnose you. Current diagnostic criteria forbid consideration of genetic status even inpeople with an extensive family history And of course a negative test doesn’t rule anything out. Don’t delude yourself into thinking doctors will take you more seriously. They don’t. I have seen the struggles of gene carriers to be heard.

If you insist on testing know that a positive test can lead to genetic discrimination in lifeinsurance, disability and even housing. Invitae has a program for free testing for various people including children of PALS. So does the lighthouse program. You need a clinician to order and you should have counseling before testing. The odds of finding a genetic mutation if you have only 1 relative affected and that in their 60s are low
 
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