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PubMed This is a summary of 14 peer-reviewed journal articles Updated
Neurology · Charcot-Marie-Tooth Disease

How Fast Does Charcot-Marie-Tooth (CMT) Progress?

At a Glance

Charcot-Marie-Tooth (CMT) disease generally progresses very slowly over decades, not weeks or months. It is a length-dependent condition, meaning symptoms typically start in the feet and lower legs before slowly moving upward. Progression speed varies depending on your genetic subtype.

In this answer

3 sections

01

The “Length-Dependent” Pattern

02

Progression by CMT Subtype

03

Long-Term Mobility and Tracking

Charcot-Marie-Tooth (CMT) disease is typically a very slowly progressive condition [1]. For the vast majority of people with CMT, the disease worsens gradually over decades, rather than over weeks or months [2]. Because the changes happen so slowly, many people are able to adapt to their symptoms and maintain their independence over time.

The “Length-Dependent” Pattern

CMT is described by doctors as a length-dependent neuropathy [1]. This means that the disease affects the longest nerves in the body first.

  • Early Stages: Symptoms typically begin in the feet and lower legs, which doctors refer to as the distal extremities [1]. You may first notice physical changes or mobility issues like very high arches, frequent tripping, or “foot drop” (difficulty lifting the front part of the foot).
  • Later Stages: As the years pass, the weakness and sensory changes slowly travel further up the legs [1]. Eventually, the disease may begin to affect the hands and arms, spreading closer to the center of the body (proximally) [1].

Progression by CMT Subtype

The exact speed and severity of progression depend heavily on the specific genetic subtype of CMT you have [3]. Your doctor can determine your exact subtype using a genetic blood test.

  • CMT1A: This is the most common demyelinating subtype, meaning it damages the protective coating around your nerves (the myelin sheath) [4]. It generally follows a slow, steady, and relatively predictable course of progression [5]. During childhood and adolescence, it usually shows a consistent, gradual worsening [6].
  • Other Subtypes (such as CMT1B, CMT2, and CMTX): These forms can be more variable [7][8]. CMT2, for example, is an axonal form, meaning it damages the actual nerve fibers themselves [7]. Subtypes like CMT1B and CMT2A might show periods of accelerated progression during the teenage growth years (ages 11-20) [9][10]. Certain axonal forms, like CMT2A2, can present with more significant limitations in walking and strength compared to the often less progressive CMT1A [3][11].

Long-Term Mobility and Tracking

Because CMT is a chronic condition, a major focus of long-term care is preserving your mobility [1]. As muscle weakness and sensory loss progress, the risk of falls can increase [12]. Over time, many people use practical interventions to maintain their balance and independence, such as physical therapy, occupational therapy, or ankle-foot orthoses (AFOs or braces) [2].

Working with your care team to regularly track your progression can help you anticipate changes and adjust your care plan. Rather than just relying on how you feel, your doctor might test your walking speed, measure your muscle strength, or occasionally order specialized scans to objectively track your nerve health over time [13][14].

Common questions in this guide

How quickly does Charcot-Marie-Tooth disease get worse?
For most people, Charcot-Marie-Tooth (CMT) progresses very slowly over a period of decades. Because these changes happen so gradually, many individuals are able to adapt to their symptoms over time and maintain their independence.
Where do CMT symptoms usually start?
CMT symptoms usually begin in the feet and lower legs, often appearing as high arches, frequent tripping, or foot drop. This happens because CMT is a length-dependent neuropathy, meaning it damages the longest nerves in your body first before eventually affecting the hands and arms.
Does the type of CMT affect how fast it progresses?
Yes, the speed and severity of progression depend heavily on your specific genetic subtype. For instance, CMT1A usually follows a slow and steady course, while other subtypes like CMT1B or CMT2 may show periods of faster progression, especially during the teenage growth years.
How can I track my CMT progression over time?
You and your doctor can track your progression by regularly checking your walking speed, measuring muscle strength, and performing specialized nerve scans. Keeping a personal record of any new balance issues or difficulties with everyday tasks also helps your care team adjust your treatment plan.
What can I do to manage CMT progression?
While you cannot stop the nerve damage, you can protect your mobility and independence. Working with a physical therapist, occupational therapist, or using ankle-foot orthoses (AFOs) can significantly reduce your risk of falls and help preserve your function as the disease progresses.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Based on my symptoms or genetic test, which subtype of CMT do I have, and what is its typical progression timeline?
  2. 2.How often should we schedule check-ins to measure my muscle strength, walking speed, and overall disease progression?
  3. 3.What specific physical signs or changes should prompt me to contact you between our regular appointments?
  4. 4.Is it time for me to consult with a physical therapist to start a regimen focused on preserving my balance and mobility?
  5. 5.At what point should we consider an evaluation for ankle-foot orthoses (AFOs) or other mobility aids?

Questions For You

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Related questions

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References

References (14)
  1. 1

    Charcot-Marie-Tooth Disease and Other Hereditary Neuropathies.

    Klein CJ

    Continuum (Minneapolis, Minn.) 2020; (26(5)):1224-1256 doi:10.1212/CON.0000000000000927.

    PMID: 33003000
  2. 2

    The Role of Rehabilitation in the Management of Patients with Charcot-Marie-Tooth Disease: Report of Two Cases.

    Dimitrova EN, Božinovikj I, Ristovska S, et al.

    Open access Macedonian journal of medical sciences 2016; (4(3)):443-448 doi:10.3889/oamjms.2016.079.

    PMID: 27703571
  3. 3

    Retrospective study of 75 children with peripheral inherited neuropathy: Genotype-phenotype correlations.

    Hoebeke C, Bonello-Palot N, Audic F, et al.

    Archives de pediatrie : organe officiel de la Societe francaise de pediatrie 2018; (25(8)):452-458 doi:10.1016/j.arcped.2018.09.006.

    PMID: 30340945
  4. 4

    Molecular and clinical features of inherited neuropathies due to PMP22 duplication.

    Watila MM, Balarabe SA

    Journal of the neurological sciences 2015; (355(1-2)):18-24.

    PMID: 26076881
  5. 5

    Paternal gender specificity and mild phenotypes in Charcot-Marie-Tooth type 1A patients with de novo 17p12 rearrangements.

    Lee AJ, Nam DE, Choi YJ, et al.

    Molecular genetics & genomic medicine 2020; (8(9)):e1380 doi:10.1002/mgg3.1380.

    PMID: 32648354
  6. 6

    Phenotypic Variability of Childhood Charcot-Marie-Tooth Disease.

    Cornett KM, Menezes MP, Bray P, et al.

    JAMA neurology 2016; (73(6)):645-51 doi:10.1001/jamaneurol.2016.0171.

    PMID: 27043305
  7. 7

    Mutations in the MORC2 gene cause axonal Charcot-Marie-Tooth disease.

    Sevilla T, Lupo V, Martínez-Rubio D, et al.

    Brain : a journal of neurology 2016; (139(Pt 1)):62-72 doi:10.1093/brain/awv311.

    PMID: 26497905
  8. 8

    AAV1.NT-3 gene therapy for X-linked Charcot-Marie-Tooth neuropathy type 1.

    Ozes B, Myers M, Moss K, et al.

    Gene therapy 2022; (29(3-4)):127-137 doi:10.1038/s41434-021-00231-3.

    PMID: 33542455
  9. 9

    Natural history of Charcot-Marie-Tooth disease during childhood.

    Cornett KMD, Menezes MP, Shy RR, et al.

    Annals of neurology 2017; (82(3)):353-359 doi:10.1002/ana.25009.

    PMID: 28796392
  10. 10

    Longitudinal assessment of natural disease progression in Brazilian children and adolescents with Charcot-Marie-Tooth disease.

    Soares BA, Freitas CF, Cardoso J, et al.

    Arquivos de neuro-psiquiatria 2025; (83(8)):1-8 doi:10.1055/s-0045-1811174.

    PMID: 40835196
  11. 11

    Mechanisms and treatment strategies of demyelinating and dysmyelinating Charcot-Marie-Tooth disease.

    Hertzog N, Jacob C

    Neural regeneration research 2023; (18(9)):1931-1939 doi:10.4103/1673-5374.367834.

    PMID: 36926710
  12. 12

    Frequency and circumstances of falls for people with Charcot-Marie-Tooth disease: A cross sectional survey.

    Ramdharry GM, Reilly-O'Donnell L, Grant R, Reilly MM

    Physiotherapy research international : the journal for researchers and clinicians in physical therapy 2018; (23(2)):e1702 doi:10.1002/pri.1702.

    PMID: 29282812
  13. 13

    Microstructural Integrity of Peripheral Nerves in Charcot-Marie-Tooth Disease: An MRI Evaluation Study.

    Cheah PL, Krisnan T, Wong JHD, et al.

    Journal of magnetic resonance imaging : JMRI 2021; (53(2)):437-444 doi:10.1002/jmri.27354.

    PMID: 32918328
  14. 14

    Accelerate Clinical Trials in Charcot-Marie-Tooth Disease (ACT-CMT): A Protocol to Address Clinical Trial Readiness in CMT1A.

    Eichinger K, Sowden JE, Burns J, et al.

    Frontiers in neurology 2022; (13()):930435 doi:10.3389/fneur.2022.930435.

    PMID: 35832173

This page provides educational information about the progression of Charcot-Marie-Tooth (CMT) disease. Always consult your neurologist or care team to understand your specific subtype and long-term prognosis.

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