ANA Discussion Forum

General Category => NF2 => Topic started by: Archer on September 18, 2014, 02:14:53 pm

Title: Cost of NF2 testing
Post by: Archer on September 18, 2014, 02:14:53 pm

Back when I found out I had AN #2 I was told NF2 testing couldn't be done without a sample of the AN.  So, not wanting to remove #2 and lose hearing in both ears, I chose W&W.  Now I am going for GK next week to get #2 zapped and am hearing NF2 testing is possible from a blood sample.  Also hearing my insurance won't necessarily cover the testing.  Does anyone have any idea of what genetic testing cost is if it is done out of pocket?  It'd be nice to find out if this was Mosaic or not.

Title: Re: Cost of NF2 testing
Post by: Susan A on September 25, 2014, 02:05:49 pm

Archer - with 2 ANs you automatically fit the criteria for NF2, whether you have testing done or not, so my guess is that your insurance will say there's no point in having the testing done! http://www.nf2is.org/diagnosis.php (http://www.nf2is.org/diagnosis.php) I seem to remember reading online that the testing is $2,000 or more and also that if you have testing done on a blood sample rather than a tumor there is a significant chance of a false negative result. 
Are you seeing an NF2 specialist at this point or just a doc who knows about ANs?

Title: Re: Cost of NF2 testing
Post by: Archer on October 06, 2014, 02:00:40 pm

Susan A, thanks for your response.  I have no question whether I am NF2 or not.  My question is whether I am Mosaic or not.  Will this test tell me that? 

Title: Re: Cost of NF2 testing
Post by: Susan A on December 29, 2014, 07:41:39 am

Sorry for the belated response . . . No, genetic testing won't necessarily tell you whether you have a mosaic form of NF2 or not, but it might. If you have a mosaic form, that means you don't have it in every cell in your body. That means that if they test material other than one of your tumors (like a blood sample), you might get a negative test result when in fact other cells in your body still have NF2. If you get a positive response it may show that you don't have NF2 in every cell, or it may not.

People who have the mosaic form usually have a milder version with fewer tumors. There is no real advantage (certainly as far as your insurance company is concerned) in knowing if you have the mosaic form. You get regular MRIs and deal with the tumors you have.