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tomleewa

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Jul 1, 2016
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Reason
PALS
Country
US
State
WA
City
Tumwater
I have a question. Where can I get genetic test for my ALS? I asked my neurologist and he referred me to ALS clinic.
 
Gene testing can technically be ordered by any doctor. When I was tested the lab( Athena) required the doctor to certify I had been counseled about it. Your neuro apparently does not feel comfortable ordering it. Are you not going to the ALS clinic? If you are they should talk to you about testing options and help you decide what to test for. In the meantime, find out if the testing is covered by insurance.

Do you have reason to believe you are FALS? Or are you wondering about a de novo mutation? If the latter and you have to pay you might consider testing for c9 as it is the most likely to show up without history.
 
Thanks for a quick respond, Nikki. I was diagnosed with ALS in February. Then my neurologist sent me to ALS clinic (Cedar Sinai). I was confirmed at the ALS clinic. Now walking becomes more difficult for me. I can't walk far and I don't want to use the wheelchair yet, so I just want to see neurologist around my area.
 
If you have been to the clinic you might call and see if they have any current studies where they will test you. There was one that was testing for c9 but that seems to have changed focus and is only enrolling people known to be c9

You did not say why you want to test and depending on why and your insurance coverage it really might be worthwhile making a clinic visit to discuss this. A whole panel used to be tens of thousands It is much cheaper now but still over a thousand- maybe by a lot more
The only current trial where it would matter to your care is SOD1. They tell me c9 next year probably. They have said that every year since 2013
 
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