Insurance Denied Genetic Testing, Thank Goodness!

When we went to the ALS clinic on June 2nd, the doctor(s) wanted to order a genetic test to see if Eric had the "genetic markers" for ALS. They asked him several questions related to whether anyone in his family had Alzheimer's.


I guess there are new studies that somehow link Alzheimer's to muscular degenerative issues. His mother, now 89, is showing signs of Alzheimer's which he answered affirmatively at his exam.


I was really frustrated for several reasons when she wanted to order this test:
1) THIS IS A $5000 TEST and it doesn't mean ANYTHING! 
See, even the ALS website notes that only 5% of ALS cases are familial (although this clinic told us 10-15%).
SO TESTING MEANS NOTHING...
If he DOESN'T have the genetic indications, he could STILL have ALS, right? AND if he DOES have the markers, then that doesn't actually mean he has ALS... IT COULD STILL BE LYME OR SOMETHING ELSE!


2) BECAUSE this test is so ridiculously expensive, she refused to order the ONE test we asked for: a test for Rickettsia - a co-infection of Lyme disease. She said that she didn't want to look like they were grasping for straws by ordering several tests, especially because the genetic one was so expensive.
(Then WHY NOT start with the CHEAPER test?!?)

As I pointed to Eric I told her, "This is a man who has suffered from depression most of his life. What you are giving him is a HUGE diagnosis. We have four kids! I don't understand why you wouldn't order just ONE test that we are asking for to give us an ounce of HOPE!"

She said that if the genetic test came back negative, she'd order whatever test we wanted. Well... today we received in the mail a letter that the test had been DENIED. Halle-fucking-lujiah! What a WASTE of 5 Grand!
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3) AND finally, WHAT WOULD WE HAVE TOLD OUR KIDS IF THE TEST HAD COME OUT POSITIVE??? I mean, seriously!
So, when we left the doctor's office, we never mentioned the test to our kids.
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We don't have an appointment to go back to the ALS clinic until Sept. By then we will have seen Dr. Parpia of Gordon Medical Group, who will hopefully look at ALL potential CAUSES and do the necessary testing to help shed light on what is going on in his system.