Cost of genetic testing

Has anyone in the US undergone genetic recently? Sometime during the diagnostic process, one of the neurologists I saw suggested genetic testing. The cost, at that time, was prohibitive--$35,000 or more. This was probably about 2009. Has the cost of this testing come down?

Yes genetic testing prices have gone down. My testing for c9 in 2013 was double what I was told it was last year. Athena used to be the only lab for a lot of the genetic tests. Not so any more. I was told by an ALS genetics doctor last year that Prevention labs was the one he recommended as they were the fairest in their pricing.

If you know exactly what tests you need you can probably call the lab and get a quote

The University of Minnesota is doing my husband's testing free, but I think that has something to do with him releasing the info for research.

Thank you for the replies. (especially considering I left out the word testing in my first sentence) My cost information came from Athena. I will inquire about genetic testing at my next appointment. I'm interested in some of the new trials relating to C9 mutations.

Too bad those places like 23andMe dont cover the genes we're interested in.

I'd cough up $99 or even $199 in a heartbeat.

I was told fairly recently that c9 testing through Prevention was 280 something.

I hope I am wrong but c9 trials seem to be fairly far out still. There is a NEALs webinar coming up that is specifically on c9 so maybe there will be some information on timing Blocking c9 is turning out to be problematic as it appears we need some of it to function

<Deleted because I said something stupid and insensitive without realizing it.>

I agree, Mike. Unfortunately, some PALS and CALS are living paycheck-to-paycheck and making decisions about remaining home bound or using their savings to buy a van. This disease is bad enough but the financial ruin it brings with it is horrendous.

Lkaibel said:

The University of Minnesota is doing my husband's testing free, but I think that has something to do with him releasing the info for research.

Click to expand...

Hi Lenore,
My husband had c9 done gratis at the UofM as well. Do you know what else they are testing for?
Glad to see a fellow Minnesotan...
Pam

I don't understand. PLS is not genetic and there is no test for it. There has only been 1 family in Canada with more than 1 person in the family that has PLS. Are you testing for ALS?

Bill, I thought the same thing.

Is there a possible question of Complicated HSP? I know that some HSP expressions do affect upper body and also LMN- which can sometimes be identified with genetic testing. I have also heard some people with UMN symptoms have unusual genetic results, with no confirmation that those genetic results are what is causing their symptoms. PLS seems to be a catch all for "progressive UMN symptoms, no known HSP genetic findings".

There is a group on FB that is HSP/PLS where genetic testing is discussed. I think you will find much more feedback about which company to use, and the best prices, there. You can find it if you search "Hereditary Spastic Paraplegia HSP & Primary Lateral Sclerosis" .

Fiona

Thanks again, everyone. When I was first diagnosed, I read everything I could find concerning PLS. I remember the article about the Canadian family being the only known case where there was evidence of a PLS genetic connection. I feel that knowledge of this disease is extremely limited, so who can say if it's caused by a gene mutation. Also, some researchers still seem to believe ALS and PLS are the same disease.

In my case, knowing what I know now, I think my grandfather had ALS. He died in 1945 and was never seen by a neurologist. The local small town doctor said his problems were a series of small strokes. He lost the use of his legs, then speech, then was completely bedridden until he passed.

My father, following a serious auto accident at age 66, developed symptoms eerily similar to mine, although not as severe. He was not seen by a neurologist after leaving the hospital. He was wheel chair bound the last five years of his life but retained upper body strength. He passed from cancer at age 87.

It's only a theory that there may be a genetic component. I don't know of anyone else in the family that has been affected.