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 son is 39 and first showed signs of CMT around age 18. He was able to work until the neuropathy in his feet made it impossible. He has been turned down 4 times for disability. Is there a trick to getting disability benefits for such an obvious disability ? We are at our wits end!
Have you been able to get accepted yet. I have cmt and started this process in mid 2016. I’d be willing to share my experience with you offline and It may help you.
Hi Joe,
My name is Lisa. I’m 48, but diagnosed with hnpp at 27.
My symptoms have gotten significantly worse in the last two years, where my arms and legs are almost always numb and burning for several hours every morning. This significantly lengthens the amount of time I need to get ready to get to work on time.
Also, I have difficulty working on a computer, holding silverware, combing my hair…seems like everything!
After walking a ways I feel a foot drop.
I feel like I’m losing cognitive ability (I have sleep disorders also). I take Cymbalta for nerve pain, antidepressants, and Ambien.
I’m just beginning this time of experiencing daily disability and I feel like its affecting my job. I’m worried my employer notices I work slower and can’t keep up.
Any advice as I start down this disability path?
Joe, my son is 46. He has CMT, along with his biological father and Uncle. Any information you could provide to help him in pursuing disability benefits would be helpful! TY! Happy New Year!
Hi Joe hopefully you will get this message. I am trying to get approved disability as well and wondering how you were able to accomplish it. Thank you
Hi Joe hopefully you will get this message. I am trying to get approved disability as well and wondering how you were able to accomplish it. Thank you
I am 50 years old and just told my job I’m taking a long term of absence. They downgraded my position I had for 10 years because I can no longer type and just found out last week that I have to have major foot surgery due to CMT. I have been having issues with my shoulder and have an appointment tomorrow with specialist that due to financial reasons and a $65 copay I’ve cancelled. Any advice would be helpful I have not started my application with Social Security. I have just taking a leave of absence from work last week to keep my insurance . But I need file for disability. I would appreciate any advice Thank you Stacie
Hello Joe,
I would like to know if you would be willng to share your experience with me with regard to your getting approved for SS benefits. You may reach out to me at my email address
Thank you,
Susan
Jose, I have been working on this too for 4 years. I have been financially destroyed. I am at my wits end and my lawyer is doing everything she can. I am losing all hope and would like to talk with you?
My name is Elizabeth I’m 39 I was diagnosed with CMT at the age of 9 and my first surgery when I was 13 I have had since then 8 surgeries on both my feet and currently unable to walk with out a shoe on and no more the 10 feet without my feet giving in and my legs buckling falling to the ground. Currently with 12 screws in each foot and the hardware popping out of feet up next they want to fuse my bones and put me in a wheel chair for life. All while I’m a single mom trying to hold a job that I can’t walk from my car to my desk to even perform my duties required as my motor skills just aren’t working anymore, so how am I able to take care of my daughter who also just had her first surgery on her foot this year. She also diagnosed with CMT at the age 3 and her mobility was 20% and now only 50% on a good day. I was denied state disability and almost became homeless recently because I couldnt get up to go to work my feet, legs and body have finally said nope you aren’t walking anymore which then led to cardiac arrest because of the stress of trying to pay my Bill’s housing etc i had a heart attack in Nov and still denied by disability. Once home and released from the hospital. Still denied as if this is their money and treated so rudely in person by a disability representative. Not even listening and in a hurry to call next person when I want even done speaking. I have worked for 20 years with my disability
After every surgery pain or not I had no choice but to having to call out of work on days my body just couldnt get out of bed because I’d hit the floor, but still paying into SSI SDI even more so because of my condition and they denied me. I currently have Zero income coming in now. How can I get help and a decent person on the other end who actually will do there job and not just another order taker, or attorney just taking my money and two years later denied, most representatives I’ve spoken too are not willing to help, listen, or fight for what’s right. Instead put me on the street with a disability and a daughter who also is disabled and can barely walk herself. This is our system and you wonder why the suscide percentage has increased 32% from the ages 18 to 64 years of age. I need help as this is my last hope before I’m out of my savings and on the street with my daughter.
Lori, I was 38 when I started this process and now I am 42. I have been denied 3 times and had to reapply. Financially, I am Destroyed. I would Love to hear from you offline and see how your son is doing in the process. Please let me know if you can talk?
Hi, I’m a 49 year old woman and just been diagnosed with cmt1a. Does anyone no if I’m able to get a blue badge. Paula.
Hi. I am 26 years old from india . First shows sign with cmt around 9 and he was able to work until the neuropathy in his feet made it impossible . Now am can not walk . In on wheel chair . Please provide to me your country visa for cmt treatment.. am enjoy beutyful life. But today am can not walk
There is no treatment or cure for CMT so why do you want to move
Hi I’m turning 32 in January and have just been diagnosed with cmt, I first had signs in my hands I could barely close them without pain. I thought it was carpal tunnel syndrome as that’s what my doctor thought because I was pregnant with my third and had never happened with my other 2 pregnancies. My daughter is now 5mths old and I can close my hands but have limited strength to squeeze. Also i was born with erbs palsy when I was born my left arm didnt work my mother had to let me cry (as babies move their arms when the cry) as a form of physio. My not 100% clear as what my life is going to be like with cmt as my doctor didnt really explain it and is sending me to a specialist and my family doctor isnt clear on it either, does anyone have more info. Or advise? Not sure if it’s getting worse in my legs as the past few days my shins have been killing me to walk or put boots on or off, anyone had this pain in their shins area
I am 67 and i have had CMT since the age of around 12 years old.
Muscular waste was becoming noticeable as i grew older but i perserved in my work place and only stopped work when i reached pension age. At this point it became very difficult to continue working moreso because i have been linked to the construction industry. The main thing through most of my life was to be positive minded and committed to the reality of being the head of a family of four. Today i have become pretty weak in my upper and lower limbs and fatigue has become a big issue. Remaining as i have positive is the key and try to put your ailments behind you.
I have had cmt for 2 years along with osteoarthritis, drop foot on left foot, hammer toes, high. arch on right foot. Numbness in both feet. I have been denied disability one time. Left calf atrophy. Pain in both shoulders. I’m painfully aware that their is no cure aside from divine intervention.
I am a 64yr old man and have had chronic cmt disease for 12 yrs. I also have peripheral neuropathy i also have historical nerve damage below the waist from a crush injury from being caught up in a 3500 ton press flywheel when i was 23yrs and i still am assessed every 3yrs and every time i have to appeal and go to tribunal to get my mobility and care allowance so don’t be down hearted just go through the motions and hopefully all will be ok.