EM study and genetic tests

[Guest guest]

Well, my MDA doc has ordered EM studys of the muscle sample they

have. He's also ordering genetic blood tests for mito (through

athena). We'll see if anything comes of this.

Kim

[Guest guest]

At Athena Diagnostics, my CMT panel (which was supposed to be MITO) took a

bit under two months. This was followed by a separate delay (not at Athena)

of a MONTH during which my doc's office played games with me about releases

etc., and then finally I (not they) noticed that Athena had done the wrong

test. Once Athena was back to doing the re-test, i.e. MITO panel (eleven

mutations, including four MERRFs), they took about six weeks.

Their website has quite good specifics about the tests and the turnarounds.

All tests are listed at

http://www.athenadiagnostics.com/site/content/testing/list_profiles.asp

with MITO at

http://www.athenadiagnostics.com/site/product_search/test_description_template.a\

sp?id=208 .

They say 14-21 days for MITO, but somewhere else (phone?) I found that this

is also subject to some cycle dates, i.e. some tests only start on certain

dates each month.

I'm not clear on why my turnaround was so different from Heidi's. All I can

say is, I used to think there was a trade-off about being a squeaky wheel,

i.e. that I might piss someone off if I complained too often or too loudly.

Lately I've discovered how to be very squeaky but very polite. I called

Athena quite often, each time trying a different ploy to get past the

switchboard: " please give me customer service " , " doctor's office seeking

ordering information " , " patient wanting to report missing results " , etc. :-)

I did occasionally get people to actually look up my status, twice I think.

Another trick that's a long shot, is to call just before or just after their

stated closing hours. Once, I was connected directly to the LAB itself,

which I think is where I learned about those monthly cycle dates. YMMV. :-)

Steve D.

> Date: Wed, 29 Jun 2005 19:36:09 -0500

>

> Subject: RE: EM study and genetic tests

>

> I don't know about Athena. My genetic screens were done by several

> researchers in different locations, not a commercial lab. In that case, it

> was whenever they got around to it, maybe quickly, maybe not. Perhaps

Steve

> or Heidi can tell you how long they waited?

>

> B

[Guest guest]

Thanks for the info Steve. You're a bit sneakier than I am. 6-8

weeks doens't sound bad. It'll take about that for the electron

microscopy anyway.

Seeing I just waited 6 months for a supposed 2 month biopsy result,

I'm used to waiting. (and of course 3 1/2 years since my heart

surgery, and trying to figure out why I'm still getting worse)

Hopefully these tests will really be completed in 8 weeks or less.

Once again...hope for a dx...we'll see.

Kim

> At Athena Diagnostics, my CMT panel (which was supposed to be

MITO) took a

> bit under two months. This was followed by a separate delay (not

at Athena)

> of a MONTH during which my doc's office played games with me about

releases

> etc., and then finally I (not they) noticed that Athena had done

the wrong

> test. Once Athena was back to doing the re-test, i.e. MITO panel

(eleven

> mutations, including four MERRFs), they took about six weeks.

>

> Their website has quite good specifics about the tests and the

turnarounds.

> All tests are listed at

>

http://www.athenadiagnostics.com/site/content/testing/list_profiles.a

sp

> with MITO at

>

http://www.athenadiagnostics.com/site/product_search/test_description

_template.asp?id=208 .

>

> They say 14-21 days for MITO, but somewhere else (phone?) I found

that this

> is also subject to some cycle dates, i.e. some tests only start on

certain

> dates each month.

>

> I'm not clear on why my turnaround was so different from Heidi's.

All I can

> say is, I used to think there was a trade-off about being a

squeaky wheel,

> i.e. that I might piss someone off if I complained too often or

too loudly.

> Lately I've discovered how to be very squeaky but very polite. I

called

> Athena quite often, each time trying a different ploy to get past

the

> switchboard: " please give me customer service " , " doctor's office

seeking

> ordering information " , " patient wanting to report missing

results " , etc. :-)

> I did occasionally get people to actually look up my status, twice

I think.

> Another trick that's a long shot, is to call just before or just

after their

> stated closing hours. Once, I was connected directly to the LAB

itself,

> which I think is where I learned about those monthly cycle dates.

YMMV. :-)

>

> Steve D.

>

> > Date: Wed, 29 Jun 2005 19:36:09 -0500

> > From: " Barbara Seaman "

> > Subject: RE: EM study and genetic tests

> >

> > I don't know about Athena. My genetic screens were done by

several

> > researchers in different locations, not a commercial lab. In

that case, it

> > was whenever they got around to it, maybe quickly, maybe not.

Perhaps

> Steve

> > or Heidi can tell you how long they waited?

> >

> > B