Re: Re: Newbie Kim/ Athena Labs

[Guest guest]

Kim

I had 3 muscle biopsies sent to Athena and each came back with a differnt

diagnosis. One time, mine came back at a CPT deficiency and my sisters as a

glycogen storage disease (a rare one to boot). Genetically it just didn't

make sense. That was when I started the process of insurance approval to get

a fresh biopsy done in Atlanta. I had two biopsies at a major medical

center and they came back as there being no problem.

Good luck with finding the truth out there. It can be very frustrating.

laurie

>

> Reply-To:

> Date: Wed, 02 Mar 2005 13:31:37 -0000

> To:

> Subject: Re: Newbie Kim/ Athena Labs

>

>

>

>

> Anne-Marie,

> My pains don't last as long. They're so severe I'm stopped, can't

> talk, and sometimes sit down right where I'm at and do my best to

> breath until it's over. They're almost always in my right temple

> area.

>

> The two more common forms of glycogen storage were ruled out in St

> Louis. They can't test for the other forms there. I was told

> Athena would test for a dozen or so other glycogen storage

> diseases. Since the first biopsy was PAS positive, the docs been

> talking more about gsd than mito. I'm not sure they're telling me

> all the details of what tests are being run.

> What other lab is better?

> Kim

>

>

>>

>>

>> That's why I wonder if I may have mito (or MELAS). They always

>> assumed I had a stroke in college, some 20 years ago. Again 2 1/2

>> years ago they had to rule out stroke. With the new technology,

>> they could tell I've never actually had a stroke. I've had

>> absolutely terrible sharp pains in my head on and off as long as I

>> can remember. I've even had my right hand, arm, and side of my

> face

>> go numb for weeks. I have a couple calcifications on my MRI

> also.

>>

>>

>>

>>

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>>

[Guest guest]

I was misdiagnosed with GSD # 9 by Athena Labs.

klaga5 wrote:

>

>Anne-Marie,

>My pains don't last as long. They're so severe I'm stopped, can't

>talk, and sometimes sit down right where I'm at and do my best to

>breath until it's over. They're almost always in my right temple

>area.

>

>The two more common forms of glycogen storage were ruled out in St

>Louis. They can't test for the other forms there. I was told

>Athena would test for a dozen or so other glycogen storage

>diseases. Since the first biopsy was PAS positive, the docs been

>talking more about gsd than mito. I'm not sure they're telling me

>all the details of what tests are being run.

>What other lab is better?

>Kim

>

>

>>

>>

>>That's why I wonder if I may have mito (or MELAS). They always

>>assumed I had a stroke in college, some 20 years ago. Again 2 1/2

>>years ago they had to rule out stroke. With the new technology,

>>they could tell I've never actually had a stroke. I've had

>>absolutely terrible sharp pains in my head on and off as long as I

>>can remember. I've even had my right hand, arm, and side of my

>>

>>

>face

>

>

>>go numb for weeks. I have a couple calcifications on my MRI

>>

>>

>also.

>

>

>>

>>

>>

>> ----------

>>

>>No virus found in this outgoing message.

>>Checked by AVG Anti-Virus.

>>Version: 7.0.300 / Virus Database: 266.5.7 - Release Date: 3/1/2005

>>

>>

>>