Re: To Know Or Not To Know?

[Guest guest]

Heidi,

Yes, make an appointment with a neurologist first who will delve into family

history, examine and manually test you, see/ask about your symtoms, suggest

testing or not. Some symptoms can be managed with assistive devices, orthotics,

simple changes in the way one accomplishes things. You may also want to meet

with a genetic counselor. Knowing the type of CMT you have may allow you to

participate in specific clinical trials in the future.

Sure, right now there isn't disease arrestment, but a number of us follow

exercise regimes and nutritional programs which seem to help. You can scan

through our Archives, Files, and Links anytime for info.

Again, welcome to our network!

Gretchen

[Guest guest]

Hi Heidi,

 

Some in my family have grappled with this question too.  As possible symptoms

began to appear, it seemed worse not to know and just be wondering.  If you are

concerned about it, you may just want to find out for sure, especially if you

have childbearing decisions or other life choices decisions to make.

 

Other things factor into the equation, such as does your insurance cover

testing?  If not, can you afford the cost?

 

Recently, a neurologist was able to rule out CMT for a family member with 98%

certainty without the genetic test.  So, maybe just start with a neurologist

exam and then decide if you want the testing.  By sure to bring the CMT subtype

info (the type of CMT your family members have) with you when you go to the

doctor, as this is important info in his/her evaluation.

 

[Guest guest]

Thanks.

Part of it is that I don't believe that my insurance will cover the testing but

I should look into that a little more.

~Heidi

[Guest guest]

Heidi,

Knowledge is Power.

To take full control of my life, I want to know relevant information to help

myself make important decisions in my life.

May you be well and happy

Caroline

[Guest guest]

Heidi,

Yes, absolutely, unless you are not planning on children.

But if you see little things now, it's best to be prepared, at least with the

information.

[Guest guest]

When you inquire about insurance coverage for the blood test, be sure to clarify

that this is a DIAGNOSTIC test.  In other words, you have symptoms and this is

a diagnostic tool to establish a diagnosis for your symptoms. 

 

Many insurance plans don't cover genetic testing to determine if you might get a

disease in the future.  In other words, if you don't have symptoms but want to

find out if you carry the genetic defect, the insurance most likely won't cover

it.  This in not your situation, if you are having symptoms.

 

Under most plans, the doctor needs to submit the test with the correct

diagnostic code which references the symptoms in order for the test to be

covered.

 

From: Heidi <williams-heidi@...>

Subject: Re: To Know Or Not To Know?

Date: Tuesday, October 19, 2010, 10:44 AM

 

Thanks.

Part of it is that I don't believe that my insurance will cover the testing but

I should look into that a little more.

~Heidi

[Guest guest]

Thanks to everyone for their input, suggestions and support.

~Heidi

From: [mailto: ] On Behalf Of

Sent: Tuesday, October 19, 2010 6:31 PM

Subject: Re: To Know Or Not To Know?

When you inquire about insurance coverage for the blood test, be sure to clarify

that this is a DIAGNOSTIC test. In other words, you have symptoms and this is a

diagnostic tool to establish a diagnosis for your symptoms.

Many insurance plans don't cover genetic testing to determine if you might get a

disease in the future. In other words, if you don't have symptoms but want to

find out if you carry the genetic defect, the insurance most likely won't cover

it. This in not your situation, if you are having symptoms.

Under most plans, the doctor needs to submit the test with the correct

diagnostic code which references the symptoms in order for the test to be

covered.

From: Heidi <williams-heidi@...

<mailto:williams-heidi%40sbcglobal.net> >

Subject: Re: To Know Or Not To Know?

<mailto:%40>

Date: Tuesday, October 19, 2010, 10:44 AM

Thanks.

Part of it is that I don't believe that my insurance will cover the testing but

I should look into that a little more.

~Heidi

[Guest guest]

I was diagnosed pretty well many years back through family history, symptoms and

an EMG. My insurance denied the Athena testing saying since it would not change

my treatment plan it was not medically necessacary. I didn't dispuite their

decision.

Not that others shouldn't try, just my experience/

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