There is some uncertainty about whether I have CMT

1. There are people who were told they had CMT by multiple providers, who do not actually have a hereditary neuropathy.

You should seek evaluation by a neurologist at an HNF Center of Excellence to confirm if you have CMT or another form of peripheral neuropathy.

• If you have ever had a nerve conduction study/electromyography (NCS/EMG), be sure to locate a copy of your report to bring to your neurology visit. The NCS/EMG is a procedure where the electrophysiologist places electrodes and/or needles along various points in your arms and legs to determine if electrical impulses are properly being read and processed by your nerves and/or muscles. If you have not had this test, it might be necessary in order for the neurologist to give a definitive diagnosis.

2. You may move forward with your own genetic testing.

however, a negative or uncertain result might still leave us uncertain about whether you have CMT.

3. There are currently two labs that offer sponsored Genetic Testing for people who have symptoms of neuropathy:

Invitae

more info⇒

• Must have sensory and/or motor neuropathy
• Must be at least 18

Ambry

more info⇒

• Must have sensory AND motor neuropathy
• Must be at least 18

GeneDx

more info⇒

• Must have neuropathy
• Must be at least 18
• Must reside in US
• How can I get tested?

At any point, if you decide to proceed with genetic testing, you may access our virtual CMT counseling service without a prescription by clicking on “Book A Call”. This will allow you to schedule an Intro Zoom meeting (or call if preferred) with the HNF team to learn more about what matters most to you at this point during your diagnostic journey.

During the call, you’ll be connected with our genetic counseling service to schedule an initial consultation and testing.

1. Book a Call

At any point, if you decide to proceed with genetic testing, you may access our virtual CMT counseling service without a prescription by clicking on “Book A Call.” This will allow you to schedule an Intro Zoom meeting (or call if preferred) with the HNF team to learn more about what matters most to you at this point during your diagnostic journey. During the call, you’ll be connected with our genetic counseling service to schedule an initial consultation and testing.

2. Cash pay

• The most cost-effective labs charge between $250-1,000 for a multi-gene panel
• You CANNOT file a claim for insurance reimbursement if you choose the cash pay route.
• Some people choose this route because they do not want to wait longer for testing, or because they want to know ahead of time what they will be paying, so there are no surprises after the test is completed.

3. Insurance

• Pay close attention to your policy’s Evidence of Coverage booklet to see if genetic testing is a covered benefit
  • Many insurance policies only cover genetic testing for certain conditions (such as hereditary cancer risk)
  • You may need to know the CPT codes for the test (contact the lab directly)
  • Your test may only be covered under certain circumstances (such as to be used for family planning)
• Prior authorization
  • Some insurance policies require that a request for the service is presented to insurance BEFORE the test is run
  • Some insurance policies WILL NOT offer prior authorization for a service not already listed in the Evidence of Coverage, which might mean that the test will NOT be covered
  • Remember, prior authorization IS NOT GUARANTEE OF PAYMENT. Once the test is run, the lab files a claim for reimbursement for the cost of the test. If it is determined that the test did not meet requirements for reimbursement (for example, if it is determined to not have been medically necessary), insurance may not provide any reimbursement to the lab. In this case, you may receive a balance bill, where you are responsible for paying the original price of what the lab charged your insurance for the test. This could be several thousands of dollars.

Financial aid

• Many labs offer financial assistance to patients who cannot otherwise afford genetic testing
  • Aid is often based on family size and annual income; other pressing circumstances may be considered (such as a death in the family or excessive medical bills)
  • Most labs require you to choose insurance pay to be eligible for assistance
  • You may need to submit proof of income (such as W-2, pay stubs, or 1090 tax forms)
• If you don’t have insurance, you might be able to apply for an economic hardship grant through the lab
  • Labs may be limited in the number of grants they provide each year
• Interest-free payment plans may also be an option

5. How can I get tested?

At any point, if you decide to proceed with genetic testing, you may access our virtual CMT counseling service without a prescription by clicking on “Book A Call”. This will allow you to schedule an Intro Zoom meeting (or call if preferred) with the HNF team to learn more about what matters most to you at this point during your diagnostic journey. During the call, you’ll be connected with our genetic counseling service to schedule an initial consultation and testing.