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Charcot-Marie-Tooth Disease and Long Term Disability: What You Need to Know

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If you’re living with Charcot-Marie-Tooth (“CMT”) disease, you know firsthand how its symptoms can make it increasingly difficult to manage daily tasks, let alone perform the duties of a demanding job.  For many individuals, the progressive nature of CMT can eventually force them to consider long term disability insurance benefits as a financial lifeline.

However, obtaining long term disability benefits for CMT can be a complex and frustrating process.  Insurers often question the severity of symptoms or argue that you can still perform some type of work.  To secure the benefits you deserve, you’ll need to present a strong case that clearly documents the impact of CMT on your ability to work.

Below, we’ll answer common questions about the key aspects of filing a long term disability claim for Charcot-Marie-Tooth disease, whether you’re just starting the claims process, preparing to appeal a denial, or facing litigation.

Charcot-Marie-Tooth (“CMT”) disease is a progressive neurological condition that affects peripheral nerves, leading to physical and sometimes cognitive impairments.  These symptoms can make it challenging to meet the demands of many jobs, especially those requiring fine motor skills, physical stamina, or high levels of cognitive focus.

Common disabling physical symptoms of CMT may include:

    • Muscle Weakness and Atrophy: CMT often causes weakness in the hands, arms, feet, and legs, leading to difficulty with tasks like typing, writing, or using tools.  For professionals who rely on manual dexterity—such as surgeons or dentists—these symptoms can make continuing work impossible.
    • Balance and Coordination Issues: Damage to the nerves controlling muscle function can result in frequent falls or trouble with walking and standing.  This can limit mobility and make jobs that require movement or prolonged standing, such as teaching or healthcare roles, extremely difficult.
    • Chronic Pain and Fatigue: Many individuals with CMT experience nerve pain or burning sensations, as well as severe fatigue.  These issues can interfere with productivity and focus, particularly in high-pressure roles like law, healthcare, finance, or management.
    • Deformities of the Hands and Feet: Conditions like claw toes, high arches, or contractures can worsen over time, making it painful or impossible to wear certain shoes or use your hands effectively.  This can be particularly disabling for professionals who need to travel or perform precision tasks.

Although CMT primarily affects peripheral nerves, some individuals may experience cognitive symptoms related to the mental toll of managing a chronic illness.  These include:

    • Difficulty concentrating or remembering details, which can hinder decision-making and productivity in roles requiring complex analysis or problem-solving; and
    • Emotional strain, such as anxiety or depression, which can reduce your ability to cope with the demands of a high-stakes professional environment.

Charcot-Marie-Tooth disease’s progressive nature means that symptoms often worsen over time, making it difficult for high-wage professionals to maintain the pace, precision, and consistency their roles demand.  Long term disability insurance can provide critical support if your symptoms prevent you from continuing to work at your full capacity.

 

Can I receive long term disability due to Charcot-Marie-Tooth disease?

Yes, you can receive long term disability (“LTD”) benefits due to Charcot-Marie-Tooth (“CMT”) disease if your symptoms prevent you from performing the essential duties of your job.  CMT is a progressive neurological disorder that can cause significant physical and, in some cases, cognitive impairments, making it challenging to sustain employment.  However, qualifying for benefits requires meeting the terms of your long term disability policy and providing thorough documentation of your condition and its impact on your ability to work.

The exact eligibility criteria for benefits will depend on the terms of your long term disability insurance policy.  Generally speaking, your insurer will require that you demonstrate that your CMT symptoms are severe enough to interfere with your ability to perform your job.

Insurance companies typically consider:

    • Physical Limitations: CMT commonly causes muscle weakness, balance issues, chronic pain, and fatigue.  These symptoms can make it difficult to perform tasks that require physical stamina, dexterity, or mobility.  For example, if you cannot type due to hand weakness or stand for long periods because of foot deformities, your ability to work in your role may be significantly impaired.
    • Cognitive or Emotional Challenges: Although less common, some individuals with CMT experience cognitive impairments, such as difficulty concentrating, or emotional strain, such as depression or anxiety.  These factors can also impact your productivity and focus in demanding professional roles.
    • Progression of Symptoms: Because CMT is a progressive condition, your ability to work may decline over time, even if you could previously perform your job duties.  Insurers will want evidence showing how the progression of the disease has worsened your symptoms and reduced your functionality.

CMT often causes severe and frequent symptoms that would meet the common eligibility criteria laid out in long term disability policies.  For example, a trial attorney might struggle with prolonged standing in court, carrying heavy files, or meeting the rigorous demands of deadlines and case preparation due to fatigue and weakness.  An executive or business owner could face challenges managing a fast-paced workload if their symptoms impair typing, writing, or their ability to sit for extended periods during meetings.  A software engineer may lose the fine motor control needed for fast, accurate typing or experience mental fatigue that makes coding and debugging more difficult.

As serious as CMT is as a medical condition, your insurer will not approve your claim on a diagnosis alone.  They will require documentation to support your work limitations due to your symptoms.  We’ll discuss what evidence you may use to substantiate your Charcot-Marie-Tooth disease long term disability claim in the next section.

 

How can I prove my Charcot-Marie-Tooth disease long term disability claim?

Proving your long term disability (“LTD”) claim for Charcot-Marie-Tooth (“CMT”) disease requires comprehensive evidence that demonstrates how your symptoms prevent you from performing your job.  Insurance companies will want objective proof of your condition and its impact on your ability to work.  To build a strong case, you should gather both medical and vocational evidence.

Medical Evidence for CMT Long Term Disability

Doctor is making a diagnosis for a patient in medical officeMedical evidence is the foundation of your claim.  Your insurer will want you to provide detailed documentation of your CMT diagnosis, the progression of your symptoms, and how they impair your functional capacity.

Medical evidence you may use to prove your CMT long term disability claim includes:

    • Specialist Diagnoses: A confirmed diagnosis of CMT from a neurologist or other specialist is essential.  This should include your medical history, clinical evaluations, and diagnostic test results such as nerve conduction studies, electromyography (“EMG”), and genetic testing (if applicable).
    • Medical Records and Treatment Notes: Consistent and thorough records from your doctors and therapists, detailing your symptoms and the progression of your condition, are crucial.  These notes should describe pain levels, fatigue, or sensory loss that limit your ability to work; muscle weakness or atrophy in your hands, arms, legs, or feet; and deformities, such as high arches or claw toes, and their impact on mobility.
    • Supportive Letters from Treating Physicians: A detailed letter from your neurologist or primary care doctor explaining how your symptoms prevent you from performing your job duties can be particularly helpful.  Ensure they connect your specific limitations to your work requirements.
    • Functional Capacity Evaluation (“FCE”): An FCE is a key piece of objective evidence that evaluates your ability to perform work-related physical tasks, such as lifting, walking, standing, or using your hands.  This evaluation can highlight limitations caused by muscle weakness, balance issues, or fatigue.
    • Pain Diaries or Symptom Logs: Keeping a record of your daily symptoms, including their frequency, severity, and how they affect your activities, can add a personal, detailed perspective to your claim.

 

Vocational Evidence for CMT Long Term Disability

Vocational evidence helps demonstrate how your CMT symptoms affect your ability to perform your job or any other work you may be qualified for. Examples of vocational evidence include:

    • Job Description: Provide a detailed description of your job duties, including physical, cognitive, and emotional demands.  This can include both your employer’s official job description and a personal statement from you explaining all physical and cognitive demands of your role.  Detail how tasks like standing for long periods, typing, or using tools are affected by your symptoms.
    • Vocational Assessment: A vocational expert can provide an analysis of how your CMT symptoms make it impossible for you to meet the demands of your job or similar roles.  They may also address whether reasonable accommodations would enable you to work and whether those accommodations are practical.
    • Performance Reviews or Employer Statements: If your work performance has declined due to your symptoms, records from your employer can demonstrate how your condition impacts your ability to meet expectations.

By providing thorough, consistent medical and vocational evidence, you can build a strong foundation for your CMT long term disability claim.

 

Why do insurance companies commonly deny claims for Charcot-Marie-Tooth disease?

Insurance companies frequently deny long term disability (“LTD”) claims for Charcot-Marie-Tooth (“CMT”) disease for several reasons.  These denials often stem from the nature of the condition itself, the way symptoms are reported, and the tactics insurers use to limit payouts.  Understanding these common reasons can help you anticipate and address potential challenges in your claim.

Common reasons for CMT claim denial may include:

    • Lack of Objective Evidence: CMT symptoms like pain, fatigue, and weakness can be difficult to measure objectively.  Insurers may claim that your diagnosis alone isn’t enough to prove disability and argue that there is insufficient medical evidence linking your condition to your inability to work.  They may demand objective tests, such as nerve conduction studies or Functional Capacity Evaluations (“FCE”), to assess the severity of your symptoms.  If your medical records don’t include consistent documentation of your functional limitations, your insurer may question the validity of your claim.
    • Misinterpretation of Policy Terms: Insurance policies have specific definitions of disability, which can vary significantly between “own occupation” and “any occupation” policies.  With an "own occupation" policy, you must prove you can no longer perform the duties of your specific job.  Under an “any occupation” policy, you must show that you’re unable to perform any job for which you’re reasonably qualified.  Insurers often interpret these definitions narrowly, arguing that your CMT does not prevent you from working in some capacity, even if it’s not in your current role or at your previous salary level.
    • Claiming Symptoms Aren’t Severe Enough: CMT symptoms can vary in severity and progression, making it easier for insurers to argue that your condition doesn’t warrant disability benefits.  They may claim that your symptoms, like muscle weakness or fatigue, are mild or manageable, and that you can still perform sedentary work, even if you cannot meet the physical demands of your previous job.
    • Failure to Consider the Progressive Nature of CMT: CMT is a progressive disease, meaning your symptoms may worsen over time.  Insurers often focus on your current condition and ignore how the disease is likely to affect your ability to work in the future.  Without medical evidence showing the trajectory of your condition, they may deny your claim, stating that you’re still capable of working now.
    • Insufficient Vocational Evidence: Even if your medical evidence is strong, insurers may argue that your job does not require the physical or cognitive abilities you claim to lack.  This often happens when claimants fail to provide detailed descriptions of their job duties or evidence from vocational experts explaining why their symptoms make work impossible.
    • Surveillance and Misinterpretation of Activities: Insurance companies often conduct surveillance to gather evidence against your claim.  They may use photos, videos, or social media posts to argue that you are more active than reported, undermining your credibility, or your symptoms don’t prevent you from engaging in work-related activities.
    • Claiming Lack of Treatment or Compliance: If you are not undergoing consistent treatment for CMT or fail to follow your doctor’s recommendations (e.g., physical therapy, assistive devices, or medications), your insurer may argue that you’re not disabled or not making enough effort to manage your condition.
    • Ignoring Subjective Symptoms: CMT often causes symptoms like chronic pain, fatigue, and sensory loss, which are subjective and harder to quantify.  Insurers may dismiss these symptoms as exaggerated or unsupported by objective medical evidence, even when they are severe enough to prevent you from working.
    • Errors in Administrative Process: ERISA-governed LTD policies often involve complex procedural requirements.  Insurers may deny your claim due to missing documentation or deadlines, incomplete medical records, or procedural technicalities that have little to do with the merits of your claim.

By understanding why insurers commonly deny CMT claims, you can take proactive steps to improve your chances of getting the benefits you deserve.  It’s always recommended that you seek legal advice when filing a long term disability claim due to CMT.  An experienced long term disability attorney can help you avoid common mistakes made by claimants during the process and counter aggressive insurer tactics effectively.

 

How can I strengthen my long term disability claim for Charcot-Marie-Tooth disease?

Strengthening your long term disability (“LTD”) claim for Charcot-Marie-Tooth (“CMT”) disease requires providing comprehensive and well-organized evidence that demonstrates how your condition prevents you from performing your job.  Insurers often deny CMT claims due to the subjective nature of symptoms like pain and fatigue or a lack of clear documentation.

Address Common Insurance Company Tactics

Be prepared for insurers to scrutinize your claim, looking for inconsistencies or reasons to deny benefits.  To preemptively address this and further substantiate your long term disability claim, you can:

    • Document Subjective Symptoms: Keep a pain diary or symptom log to track how your symptoms, such as fatigue or pain, fluctuate daily and impact your ability to function.
    • Avoid Surveillance Pitfalls: Insurance companies may use surveillance to discredit your claim.  Be mindful of how your activities could be perceived and ensure they align with your reported limitations.  Additionally, be careful what you post on social media—insurers often look for evidence online that your activities are contradictory to your reported symptoms and may use this as a reason to deny benefits, even if it is taken out of context.
    • Demonstrate Compliance with Treatment: Follow your doctors’ recommendations for treatment, such as physical therapy, medications, or assistive devices.  If you refuse or discontinue treatment, your insurer may argue that your CMT isn’t severe or that you’re not doing enough to manage it.

Ensure Consistency Across All Evidence

Inconsistencies in your medical records, personal statements, or claim forms can harm your claim.

    • Ensure your doctors’ notes align with the symptoms and limitations you report to the insurer;
    • Review your claim forms carefully to ensure accuracy and consistency with your medical records; and
    • Communicate clearly with your providers and your insurer about your limitations to avoid conflicting statements regarding your work capacity.

Understand Your Policy’s Definition of Disability

Your LTD policy will define what it means to be “disabled,” which can significantly affect your claim.

If your policy defines disability under the “own occupation” standard, you only need to prove that you can’t perform your specific job.  If it’s an “any occupation” policy, you’ll need to show you’re unable to perform any work for which you’re reasonably qualified.  Many group LTD policies begin under the “own occupation” standard before transitioning to “any occupation” after a certain time period (typically 24 months).

Individual policies may differ and only require an “own occupation” definition.  However, it is essential to review your policy carefully to understand the terms.  Consider consulting with an attorney knowledgeable in long term disability claims.  An experienced long term disability attorney can interpret your policy terms to confirm the exact criteria you must meet for benefits.

Seek Support from an Experienced Attorney

An attorney who practices long term disability claims can:

    • Interpret the terms of your LTD policy so you understand the eligibility criteria for benefits;
    • Help you obtain and organize medical and vocational evidence to strengthen your claim;
    • Address procedural issues, such as meeting deadlines or ensuring compliance with ERISA requirements; and
    • Appeal a denial effectively by identifying weaknesses in your insurer’s reasoning.

By providing detailed medical and vocational evidence, addressing insurer tactics, and ensuring consistency in your documentation, you can build a stronger case for LTD benefits for CMT.  An experienced long term disability attorney can guide you through the claims process and help you secure the benefits you deserve.

 

How can an attorney help prove my Charcot-Marie-Tooth disease long term disability claim?

Law-books-justice-scale-and-gavel-300x200When facing the complexities of a long term disability (“LTD”) claim, having an experienced attorney by your side can make a significant difference.  Riemer Hess has over 30 years of experience in handling long term disability claims, appeals, and litigation.  Our knowledgeable attorneys have helped hundreds of clients secure the benefits they deserve, including those with conditions like Charcot-Marie-Tooth disease.  Our deep understanding of LTD policies and our commitment to providing thorough, individualized support make Riemer Hess a trusted ally for those navigating the challenging landscape of disability insurance.

Riemer Hess Client Success Story

Here’s an example of how Riemer Hess helped a client with Charcot-Marie-Tooth disease secure their long term disability benefits:

Our client “Mark,” a successful investment banker at a leading financial firm, built a career defined by sharp intellect, rigorous travel schedules, and high-pressure presentations.  Since his teenage years, Mark had managed the challenges of Charcot-Marie-Tooth (“CMT”) disease.  While his condition was always present, it had been manageable.  However, after a car accident, Mark’s health deteriorated.  The accident caused a head injury that triggered debilitating double vision months later, worsened by his underlying CMT.  This new complication made walking, reading, and working on a computer nearly impossible, forcing Mark to leave his hard-earned career.

Mark had four disability insurance policies all managed by one insurer.  While he initially secured short-term disability benefits, his insurer required extensive documentation to approve LTD benefits.  They questioned how Mark’s double vision and worsening CMT symptoms affected his ability to work.  Mark’s case was further complicated by potential pre-existing condition exclusions and the need to prove how his vision and balance issues intertwined to make his job duties unmanageable.

When Mark turned to Riemer Hess for help, our attorneys took immediate action to strengthen his claim.  They coordinated updated medical evidence from Mark’s CMT specialist, who provided a detailed report linking his vision issues to his neurological condition.  We also worked closely with Mark’s eye doctor, securing a letter documenting his failed attempts to resolve his double vision with prism glasses and the risks of corrective surgery.  Additionally, Riemer Hess compiled a thorough statement outlining how Mark’s symptoms—particularly his inability to read, travel, or present effectively—prevented him from performing the core functions of his high-stakes role.

Thanks to the comprehensive evidence Riemer Hess built, the insurer approved Mark’s LTD benefits under all four policies, including retroactive payments.  The firm also assisted Mark in obtaining a waiver of premiums for his life insurance policy, securing his financial stability as he adjusted to life with his progressing condition.  Mark, grateful for all of the assistance, retained Riemer Hess to continue monitoring his ongoing LTD claims.

At Riemer Hess, our experienced ERISA attorneys understand the disability insurance claim process and what your insurer will look for, whether you’re filing a claimappealing a wrongful denial, or looking to litigate with your insurer.  To arrange for a consultation with lawyers at Riemer Hess, call us at 212-297-0700 or click the button below to schedule an exploratory call.

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