Social Security Disability Resource Center

Facts about Charcot-marie-tooth disease and Filing for Disability




 
These selected pages answer some of the most basic, but also some of the most important, questions for individuals who are considering filing a claim for disability benefits.



Facts about the condition

1. Charcot-Marie-Tooth (CMT) disease is a group of related neurological disorders inherited through genetics. It affects the nerves, muscle bulk and strength, and sensation in the feet and legs. Occasionally it also affects the hands and arms as the disease progresses.

2. Charcot-Marie-Tooth (CMT) is named for Jean-Martin Charcot, Pierre Marie and Howard Henry Tooth, who all originally described the condition. However, it has several other names: Hereditary Motor and Sensory Neuropathy (HMSN), Hereditary Sensorimotor Neuropathy (HSMN), and Peroneal Muscular Atrophy.

3. In individuals who have Charcot-Marie-Tooth disease, the nerves in extremities like the feet, lower legs, hands and forearms do not send proper signals to the brain, causing loss of sensation and muscle.

4. Charcot-Marie-Tooth causes weakness, muscle loss, loss of sensation, numbness and pain, and changes the structure of the foot to have extremely high arches and curled toes, leading to awkward gait, tripping, and difficulty lifting the foot.

5. Charcot-Marie-Tooth is a progressive disorder; symptoms continue to worsen and complications increase as individuals with the condition age, and also with significant emotional or physical stress. Progressed stages can include other areas of the body, causing trouble breathing, speaking and eating, and causing hearing and vision loss.

6. The condition usually first becomes apparent in teenagers and young adults. Initial symptoms tend to be foot abnormalities and difficulty walking. Specific symptoms, severity and progression all vary among different individuals.

7. Charcot-Marie-Tooth can be confirmed through testing. Genetic testing is the only way to be certain of the condition, although some types have not been identified in genetic makeup. Diagnosis is also made through taking a biopsy of a peripheral nerve and examining it for markers specific to CMT.

8. Tests also help show the extent of damage from the condition. Nerve conduction tests show how quickly and strongly nerves and the brain exchange signals, while electromyography (EMG) tests look at the affected muscles.

9. Charcot-Marie-Tooth disease is a lifelong and currently incurable condition.

10. There are a variety of ways to help manage Charcot-Marie-Tooth. Prescription drugs can help with pain caused by nerve damage. Physical and occupational therapy, orthopedic devices, stretching and exercising, and keeping good foot care can all help delay nerve damage and muscle loss and prevent injury.


Qualifying for disability benefits with this condition

Whether or not you qualify for disability and, as a result, are approved for disability benefits will depend entirely on the information obtained from your medical records.

This includes whatever statements and treatment notes that may have been obtained from your treating physician (a doctor who has a history of treating your condition and is, therefore, qualified to comment as to your condition and prognosis). It also includes discharge summaries from hospital stays, reports of imaging studies (such as xrays, MRIs, and CT scans) and lab panels (i.e. bloodwork) as well as reports from physical therapy.

In many disability claims, it may also include the results of a report issued by an independent physician who examines you at the request of the Social Security Administration.



Qualifying for SSD or SSI benefits will also depend on the information obtained from your vocational, or work, history if you are an adult, or academic records if you are a minor-age child. In the case of adults, your work history information will allow a disability examiner (examiners make decisions at the initial claim and reconsideration appeal levels, but not at the hearing level where a judges decides the outcome of the case) to A) classify your past work, B) determine the physical and mental demands of your past work, C) decide if you can go back to a past job, and D) whether or not you have the ability to switch to some type of other work.

The important thing to keep in mind is that the social security administration does not award benefits based on simply having a condition, but, instead, will base an approval or denial on the extent to which a condition causes functional limitations. Functional limitations can be great enough to make work activity not possible (or, for a child, make it impossible to engage in age-appropriate activities).



Why are so many disability cases lost at the disability application and reconsideration appeal levels?

There are several reasons but here are just two:

1) Social Security makes no attempt to obtain a statement from a claimant's treating physician. By contrast, at the hearing level, a claimant's disability attorney or disability representative will generally obtain and present this type of statement to a judge.

Note: it is not enough for a doctor to simply state that their patient is disabled. To satisy Social Security's requirements, the physician must list in what ways and to what extent the individual is functionally limited. For this reason, many representatives and attorneys request that the physician fill out and sign a specialized medical source statement that captures the correct information. Solid Supporting statements from physicians easily make the difference between winning or losing a disability case at the hearing level.

2) Prior to the hearing level, a claimant will not have the opportunity to explain how their condition limits them, nor will their attorney or representative have the opportunity to make a presentation based on the evidence of the case. This is because at the initial levels of the disability system, a disability examiner decides the case without meeting the claimant. The examiner may contact the claimant to gather information on activities of daily living and with regard to medical treatment or past jobs, but usually nothing more. At the hearing level, however, presenting an argument for approval based on medical evidence that has been obtained and submitted is exactly what happens.








  • Index of Social Security Disability SSI Questions and Answers

  • 56 Answers to Social Security Disability SSI Questions







  • SSDRC Homepage:

    Social Security Disability and SSI Resource Center



    The Most Basic questions about Getting Disability Benefits

    Social Security Disability and SSI Back Pay Benefits

    Social Security Disability SSI and whether or not you can work

    How long does it take for Social Security Disability or SSI?

    Social Security Disability SSI Awards and Award Notices




    Tips, Mistakes, How to Qualify, and How to Win Disability

    Tips and Advice for Social Security Disability and SSI Claims

    Common Mistakes to avoid after being denied for Disability

    Disability Qualifications and How to Qualify for Disability Benefits

    Winning Social Security Disability or SSI, How to Win




    Denials, Appeals, and Getting a Disability Lawyer or Representative

    What you should know about Social Security Disability and SSI Denials

    Social Security Disability and SSI Appeal Process - How to file appeals

    Questions about Disability Lawyers and Hiring a Disability Attorney




    Various Types of Benefits including SSI, Mental, and Child benefits

    SSI Disability Benefits, Questions and Answers

    Social Security and SSI based on Mental Disability

    Social Security Disability or SSI Benefits for Children

    Disability Benefits through Social Security




    Information to start with regarding Disability Claims

    An Overview of Social Security Disability and SSI

    What is considered a Disabling condition by Social Security?

    The Disability Requirements to be eligible for SSD and SSI Benefits




    Filing for Social Security Disability or SSI Benefits

    Social Security Disability and SSI Applications

    Social Security Disability SSI List of Conditions and Impairments

    Social Security Disability SSI: Medical Evidence and Records

    Filing your claim for disability benefits

    Eligibility for receiving disability benefits




    Resources on this site

    Social Security Disability, SSI Terms and Definitions

    Previously answered questions regarding SSD and SSI



    The SSDRC Disability Blog




    For Individuals living in North Carolina

    Disability in North Carolina

    North Carolina Disability Lawyer

    Getting disability in North Carolina








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    Information on the following topics can be found here: Social Security Disability Questions and in these subsections:

    Frequently asked questions about getting Denied for Disability Benefits | FAQ on Disability Claim Representation | Info about Social Security Disability Approvals and Being Approved | FAQ on Social Security Disability SSI decisions | The SSD SSI Decision Process and what gets taken into consideration | Disability hearings before Judges | Medical exams for disability claims | Applying for Disability in various states | Selecting and hiring Disability Lawyers | Applying for Disability in North Carolina | Recent articles and answers to questions about SSD and SSI


    These pages answer some of the most basic questions for individuals who are considering filing a claim.

    How to Apply for Disability - What medical conditions can you apply and qualify for?
    How long does it take to be approved for SSI or Social Security disability?
    What happens if I file a disability application and it is denied by a disability examiner or Judge?
    How do you prove your disability case if you have a mental condition or impairment?
    Social Security Disability Back pay and How Long it Takes to Qualify for it and receive it