For many people affected by Charcot-Marie-Tooth (CMT) and hereditary neuropathy, the first signs and symptoms develop in childhood or early adulthood. Progressive weakness and loss of muscle control in the hands, feet, arms, and legs are among the most common symptoms that can prevent employment. Deformity of the feet, hip dysplasia, fatigue, and nerve and musculoskeletal pain may also contribute to disability.
While some people are able to maintain a job with CMT, the progressive nature of the disorder may eventually make it impossible for you to work.
If you are no longer able to perform your essential job duties and cannot find alternative employment, then you may qualify for Social Security Disability benefits with hereditary neuropathy.
Medically Qualifying Under A Disability Listing:
CMT is a form of peripheral neuropathy, meaning it affects the nerves and muscles in the arms, legs, hands, and feet. The Social Security Administration (SSA) has a standard disability listing for this type of neurological disorder.
The Peripheral Neuropathy listing appears in the Blue Book, which is the SSA’s manual of conditions that “automatically” meet program eligibility requirements.
To meet the peripheral neuropathy listing, your CMT must:
• Severely disrupt your motor function and coordination.
• Affect at least two extremities.
• Cause significant issues with walking, standing, reaching, grasping, pushing, pulling, or other activities that require control of your major muscle groups.
The SSA also needs to see in your medical record that your symptoms are persistent despite following prescribed treatments.
Qualifying Without Meeting A Listed Disability:
It can be challenging to qualify without meeting a disability listing, but it is possible to prove you’re disabled by CMT through other means.
The SSA will need to take a closer look at your activities of daily living. This is done through an RFC or “residual functional capacity” evaluation. During an RFC, you and your doctor provide the SSA complete functional capacity questionnaires. These forms ask for details on everyday activities, like cleaning your home, preparing meals, or taking care of pets.
Your answers give the SSA more to work with in determining if you’re unable to perform common and essential job duties. If the RFC shows you’re so limited that you cannot work in any active or sedentary job, then you can be approved for benefits.
Supporting Your Claim For Benefits
Medical records are the key to approval, whether you meet the SSA’s peripheral neuropathy listing or must go through an RFC evaluation.
To be found medically eligible, you must have specific medical records including:
• A definitive CMT diagnosis, achieved through genetic testing, a muscle or nerve biopsy, or similar means.
• Records of the progression of your symptoms.
• EMG and other neurological exam results.
• Treatment and symptom management records.
A detailed statement from your physician can be a tremendous asset in your application for benefits as well. He or she can help you clearly communicate the full extent of your CMT’s affects on your everyday life, including how it limits or prevents your ability to work.
Applying For Benefits
With CMT, you may be able to qualify for benefits through one or both of the SSA’s disability programs. A separate application is necessary for each.
• When applying for SSI, you must participate in a personal interview with an SSA representative. This is usually done at the local office.
• SSDI applications can be completed at the local office too, or you can submit your application online, via the SSA’s website
My daughter was diagnosed at age 4 with a genetic lab test since her bio dad had CMT. My daughter has CMT1A other than her bio dad we don’t know any kids that have CMT. We haven’t worried about disability yet but I know it will be a worry in the future. For now she knows her limits. She does OT and PT as she has since she was 4 she us 9 now.
Hello, My Name is Melissa, I also have C. M. T. / Neuropathy. Can’t work, some days I struggle with just standing. Drop things coming and going. Social security disability has turned my claim down. Gave a reason of my husband’s income. That’s just not fair. 😥
Hi my name is Steve and I am 40 years old I’ve been diagnosed with CMT and have had my right toes amputated. I was wondering if anyone knew how to help me file for disability I’ve been in the hospital for over 2 weeks and will be here for another 4 to 5 weeks thank you very much and I look forward to hearing from somebody thank you
I have known I have had cmt since I was a child, I’m 30 currently my oldest who is 12 has it as well right now I am battling anything that involves my hands, my left hand has been numb since January 2021 and I literally have to ask my husband to help me get dressed most days!
I’ve been denied twice, and I do meet the criteria but my doctors won’t back it up. My neurologist is not a specialist in cmt and considers my case mild and when I asked her about my tremors she dismissed them as anxiety stating it wasn’t a real tremor because it wasn’t in my central nervous system. And my primary care doctor does not even try to understand although I have tried to show her the literature from cmt specialists. I am extremely frustrated because my doctors do not understand or care to learn about cmt. I live in a rural area so my choice in doctors is limited. I have until October 10th to appeal, but without my doctors backing me up is it even worth it? I’m never going to work again,I can barely do dishes or cook a meal. I have no advocates, I’m so frustrated.