Charcot-Marie-Tooth neuropathy, dominant intermediate B (often shortened to CMTDIB) is a very rare inherited nerve disease that mainly affects the long nerves going to the feet, legs, hands, and arms. It causes slowly progressive weakness, muscle wasting, and loss of feeling in the hands and feet. “Dominant intermediate” means that one changed copy of the gene is enough to cause the disease (autosomal dominant), and that nerve-conduction speeds are between typical demyelinating CMT (very slow) and axonal CMT (near normal). Most people with this condition have mutations in a gene called DNM2, which makes a protein called dynamin-2 that is important for how nerve cells handle their cell membranes and small transport bubbles (vesicles).MalaCards+2Monarch Initiative+2

Charcot-Marie-Tooth neuropathy dominant intermediate B (CMT-DI-B) is a rare, inherited nerve disease. It affects the long nerves that carry signals to and from the muscles and skin. In this subtype, the problem is “intermediate,” meaning the damage looks like a mix between myelin (the nerve coating) damage and axon (the nerve core) damage on tests. People usually have slowly worsening weakness in the feet and hands, trouble walking, foot deformities (like high arches), numbness, and reduced reflexes.Orpha+2MalaCards+2


Other names

Doctors and scientists have used several names for this same condition. Knowing these names helps when reading medical papers or lab reports:

Charcot-Marie-Tooth neuropathy, dominant intermediate B; Charcot-Marie-Tooth disease, dominant intermediate B; autosomal dominant intermediate Charcot-Marie-Tooth disease type B; CMTDIB; CMTDI1; DI-CMTB; DNM2 Charcot-Marie-Tooth disease; Charcot-Marie-Tooth disease caused by mutation in DNM2; Charcot-Marie-Tooth disease, axonal type 2M; Charcot-Marie-Tooth neuropathy, axonal type 2M; and similar variations. These names all point to the same group of patients with a DNM2-related intermediate Charcot-Marie-Tooth neuropathy.MalaCards+2Genetic Diseases Info Center+2


Types

Even though CMTDIB is one specific genetic disease, doctors have noticed a few slightly different clinical forms:

  1. Classic dominant intermediate B CMT – This is the most typical form, with childhood or teenage onset, slowly progressive weakness in the feet and legs, mild to moderate loss of feeling, and nerve-conduction speeds in the “intermediate” range (about 25–45 m/s in the median motor nerve).MalaCards+1

  2. Axonal form also called CMT2M – Some families with DNM2 mutations show more axonal changes, so the condition may be labeled “Charcot-Marie-Tooth disease, axonal type 2M,” but clinically it overlaps with CMTDIB and still shows intermediate or only mildly reduced conduction speeds.MalaCards+1

  3. Form with neutropenia – A few reported patients have both CMTDIB and chronic low neutrophil counts (neutropenia). This means they have increased risk of some infections along with the neuropathy, and this combination is sometimes described as “CMTDIB with neutropenia.”National Organization for Rare Disorders+1

  4. Form with early-onset cataracts – In some families, DNM2-related CMT is associated with early cataracts (clouding of the eye lens), so eye problems can be part of the phenotype.MalaCards+1

  5. Childhood-onset versus adult-onset forms – Many people develop symptoms in the first or second decade of life, but some start in adulthood. Doctors sometimes describe “early-onset” or “late-onset” forms based on the age when weakness and gait problems first appear.MalaCards+1


Causes

For CMTDIB, the main cause is a mutation in the DNM2 gene. The points below explain this core cause and other factors that can influence how severe the disease becomes. It is important to remember that, based on current knowledge, people do not “catch” this disease; they are usually born with a gene change.MalaCards+2MedlinePlus+2

  1. Inherited DNM2 gene mutation (primary cause)
    The central cause is a harmful variant in one copy of the DNM2 gene, which is inherited in an autosomal dominant pattern. A person with the mutation typically has a 50% chance of passing it to each child. The abnormal DNM2 protein disrupts normal nerve-cell membrane handling and leads to chronic damage of peripheral nerves.MalaCards+1

  2. De novo (new) DNM2 mutation
    Sometimes the DNM2 mutation appears for the first time in an affected person (a de novo mutation), meaning neither parent carries it. The biological effect on nerves is similar, but there may be no previous family history of CMT, which can delay diagnosis.MedlinePlus+1

  3. Changes in the pleckstrin homology (PH) domain of DNM2
    Many CMTDIB-causing mutations cluster in the PH domain of dynamin-2. This domain helps the protein attach to cell membranes. When this region is altered, dynamin-2 may bind membranes too strongly or in the wrong way, disturbing the formation and release of vesicles essential for healthy nerve function.International Online Medical Council+1

  4. Other functional domain mutations of DNM2
    DNM2 has several domains, including a GTPase domain and middle domains that help the protein form rings and spirals. Mutations in these regions can change how dynamin-2 uses energy (GTP) or how it assembles, leading to problems in endocytosis and membrane trafficking in neurons.MedlinePlus+1

  5. Abnormal endocytosis in nerve cells
    Dynamin-2 is key for endocytosis, the process where the cell membrane folds inward to bring substances into the cell. When dynamin-2 is abnormal, this process slows or becomes inefficient, and nerve endings have difficulty recycling synaptic vesicles, which over time damages peripheral nerves.MedlinePlus+1

  6. Disruption of membrane trafficking
    DNM2 mutations affect how vesicles move within the cell. In peripheral neurons, precise membrane trafficking is needed to maintain the long nerve fibers. Disruption of this system makes the axons and their myelin sheaths fragile and more likely to degenerate.MedlinePlus+1

  7. Impaired interaction with the actin cytoskeleton
    Dynamin-2 interacts with the actin cytoskeleton, which helps give cells their shape and supports nerve terminals. Mutated dynamin-2 may disturb actin organization, and this can further weaken the long axons, especially in distal parts of the limbs.ckb.genomenon.com+1

  8. Length-dependent vulnerability of peripheral nerves
    The longest nerves, such as those going to the feet, are most vulnerable to any disturbance in axonal transport or membrane recycling. Because DNM2 mutations impair these systems, the longest nerves show damage first, explaining why symptoms start in the feet and legs.MalaCards+1

  9. Axonal degeneration combined with myelin changes
    CMTDIB is called “intermediate” because tests show features of both axonal loss and some demyelination. Mutant DNM2 leads to chronic stress in axons and Schwann cells (the myelin-forming cells), and over years this mixed process causes weakness and sensory loss.MalaCards+1

  10. Genetic modifiers in other nerve-related genes (possible)
    Research suggests that variations in other genes involved in nerve myelin, axonal transport, or mitochondrial function might modify the severity or age of onset of DNM2-related neuropathy, although these modifiers are not fully understood yet.NCBI+1

  11. Mitochondrial stress and energy imbalance (secondary)
    Long axons need a lot of energy. Chronic problems in membrane trafficking and cytoskeleton organization can secondarily stress mitochondria, causing energy imbalance in peripheral nerves and contributing to progressive degeneration.International Online Medical Council+1

  12. Chronic mechanical stress on weak muscles
    As muscles become weak, joints and tendons are exposed to abnormal forces. Over time, this mechanical stress can worsen nerve irritation around the ankle, foot, or wrist and may speed up symptom progression, even though it is not the root genetic cause.MalaCards+1

  13. Poor footwear and repeated ankle injuries
    In people who already have CMTDIB, unstable ankles and high-arched feet can lead to sprains and falls. Recurrent injuries may further damage already vulnerable nerves and muscles in the legs and feet.MalaCards+1

  14. Diabetes or prediabetes (co-existing condition)
    Diabetes itself can cause peripheral neuropathy. When diabetes occurs in a person with DNM2-related CMT, the combined effect can make nerve damage more severe and symptoms appear earlier, although diabetes is not the original cause of CMTDIB.MalaCards+1

  15. Alcohol misuse and neurotoxic drugs (co-factors)
    Long-term heavy alcohol use or exposure to certain chemotherapy drugs and other neurotoxic medicines can harm peripheral nerves. In someone who already has DNM2-related neuropathy, these exposures can greatly worsen nerve damage.MalaCards+1

  16. Severe vitamin deficiencies (especially B vitamins)
    Lack of vitamin B12, B1, or B6 can cause or worsen neuropathy. If such deficiencies occur in a person with CMTDIB, their symptoms can become more disabling than they would be with the gene mutation alone.MalaCards+1

  17. Long-standing uncontrolled hypothyroidism
    Low thyroid hormone can cause a reversible neuropathy. In a person with genetic CMTDIB, untreated hypothyroidism may add extra nerve damage and increase fatigue and weakness.MalaCards+1

  18. Autoimmune or inflammatory neuropathies (additional)
    Very rarely, a person with CMT can also develop an acquired inflammatory neuropathy. This is not a cause of CMTDIB but an extra disease that can further reduce nerve function and confuse the clinical picture.MalaCards+1

  19. Age-related nerve degeneration
    As people age, nerves naturally lose some function. In someone with DNM2-related neuropathy, normal age-related changes add to the inherited damage, making symptoms more obvious in mid-life or later years.MalaCards+1

  20. Lifestyle factors (inactive lifestyle, obesity)
    Low physical activity, muscle deconditioning, and obesity can worsen balance and make walking harder in CMTDIB. These factors do not cause the gene mutation but can make weakness and fatigue more disabling in daily life.MalaCards+1


Symptoms

  1. Distal leg weakness
    One of the earliest symptoms is weakness in the muscles around the ankles and lower legs. People may notice it is hard to run, climb stairs, or stand on tiptoe, because the nerves to these muscles are slowly losing function.MalaCards+1

  2. Foot drop and tripping
    Weakness of the muscles that lift the front of the foot causes “foot drop,” where the toes drag during walking. This leads to frequent tripping, especially on uneven ground or when the person is tired.MalaCards+1

  3. High-arched feet (pes cavus)
    Many people with CMTDIB develop high-arched feet and sometimes clawed toes. These structural changes are due to unbalanced pulling of weak and relatively stronger muscles in the feet over time.MalaCards+1

  4. Distal muscle wasting
    The muscles of the feet, calves, hands, and sometimes forearms can become noticeably thinner (atrophy). This is because the nerves that supply them are damaged, and the muscles cannot maintain their normal bulk.MalaCards+1

  5. Weakness in hands and fingers
    As the disease progresses, people may find it hard to open jars, button clothes, write for long periods, or perform fine hand tasks. This reflects involvement of the distal arm nerves and muscles.MalaCards+1

  6. Numbness in feet and hands
    Sensory nerves are also affected, so patients frequently report numbness or reduced feeling in the toes and fingers. This can make it hard to feel small injuries or to sense the ground when walking.MalaCards+1

  7. Tingling or “pins and needles” sensations
    Many people experience tingling, burning, or electric-like sensations in the feet and sometimes the hands. These feelings are signs of irritated or damaged sensory nerve fibers.MalaCards+1

  8. Neuropathic pain in some patients
    Some individuals develop aching, burning, or shooting pain in their legs or feet. Not everyone with CMTDIB has pain, but when it occurs, it usually reflects ongoing nerve injury and abnormal pain signaling.MalaCards+1

  9. Reduced or absent reflexes
    Knee and ankle jerks are often reduced or absent when checked with a reflex hammer. This is a typical sign of peripheral neuropathy and helps doctors distinguish it from problems in the brain or spinal cord.MalaCards+1

  10. Gait disturbance and balance problems
    Because of weakness, sensory loss, and foot deformities, many people develop an unsteady or high-stepping gait. Balance can be especially poor in the dark, when visual cues are reduced.MalaCards+1

  11. Frequent ankle sprains and falls
    Instability around the ankle and altered foot shape increase the risk of sprains and falls. People may report that they twist their ankle easily or fall when walking on uneven surfaces.MalaCards+1

  12. Fatigue and reduced stamina
    Walking and standing require more effort because of weak muscles and poor balance. Many patients feel tired after short distances and may need rest breaks more often than peers.MalaCards+1

  13. Hand clumsiness and difficulty with fine tasks
    When hand nerves are affected, handwriting may become messy, and tasks like typing, sewing, or playing instruments can become harder. This can affect school, work, and hobbies.MalaCards+1

  14. Early-onset cataracts in some forms
    In some DNM2-related cases, cataracts develop earlier than usual in life. This can cause blurred or cloudy vision and sometimes glare, adding to overall disability.MalaCards+1

  15. Recurrent infections in forms with neutropenia
    When CMTDIB is associated with neutropenia, people may have more frequent bacterial infections, such as repeated sinus, ear, or skin infections. This goes beyond the usual nerve symptoms and requires specific blood monitoring.National Organization for Rare Disorders+1


Diagnostic tests

Physical examination tests

  1. Complete neurological examination
    A neurologist checks muscle strength, tone, reflexes, and sensation in the arms and legs. The pattern of distal weakness, sensory loss, and reduced reflexes suggests a length-dependent peripheral neuropathy like CMTDIB rather than a brain or spinal cord problem.MalaCards+1

  2. Gait and posture assessment
    The doctor observes how the person walks, runs, turns, and stands. A high-stepping gait, difficulty walking on heels, and problems with tandem walking (heel-to-toe) are common clues to distal leg weakness and sensory loss in CMT.MalaCards+1

  3. Inspection of feet and hands
    Visual examination looks for high arches, hammertoes, calluses, and muscle wasting in the feet and calves, as well as thin hand muscles. These structural changes build up over time and strongly support a chronic hereditary neuropathy diagnosis.MalaCards+1

  4. Eye examination in clinic
    A basic eye check can identify reduced visual acuity or signs suggesting cataracts. When early cataracts are present together with a DNM2 mutation and neuropathy, this supports the diagnosis of a DNM2-related CMT form.MalaCards+1

Manual bedside tests

  1. Manual muscle strength testing (MRC scale)
    The examiner tests specific muscle groups (for example ankle dorsiflexion and plantar-flexion) against resistance and grades strength using the Medical Research Council (MRC) scale. Distal muscles in the feet and hands are usually weaker than proximal muscles in CMTDIB.MalaCards+1

  2. Sensory mapping with light touch and pin
    Using cotton and a pin or single-use neurotip, the clinician compares feeling in different skin areas. Reduced pin-prick or light touch in a “stocking and glove” distribution supports peripheral neuropathy affecting long sensory fibers.MalaCards+1

  3. Romberg and balance tests
    In the Romberg test, the patient stands with feet together and then closes their eyes. Increased swaying or loss of balance suggests impaired position sense from large sensory fibers, which is common in hereditary neuropathies.MalaCards+1

  4. Heel-toe and tiptoe walking tests
    Asking the patient to walk on heels, on toes, and in a straight line can highlight weakness of ankle muscles and balance problems. Difficulty with these simple tasks is characteristic of distal neuropathies like CMTDIB.MalaCards+1

Lab and pathological tests

  1. Complete blood count with differential
    A full blood count checks hemoglobin, platelets, and white cells. In CMTDIB forms associated with neutropenia, the neutrophil count is persistently low, which helps identify this special subtype and plan infection-prevention measures.National Organization for Rare Disorders+1

  2. Metabolic and vitamin tests (B12, folate, glucose, thyroid)
    Blood tests for vitamin B12, folate, blood sugar, and thyroid function help rule out other common, potentially treatable causes of neuropathy. These tests do not diagnose CMTDIB but are important to exclude additional or alternative causes.MalaCards+1

  3. Liver and kidney function tests
    Basic chemistry tests check for organ problems that might affect drug choices or contribute to neuropathy. For example, severe kidney disease can worsen nerve damage, so identifying this helps refine the diagnostic picture.MalaCards+1

  4. Autoimmune screening when indicated
    Tests such as ANA or other autoimmune panels may be done if inflammation is suspected. A negative or low-significance result supports the idea that the neuropathy is inherited rather than caused by an acquired immune disease.MalaCards+1

  5. Nerve biopsy (rarely needed)
    A small piece of sural nerve can be taken and examined under the microscope. In CMTDIB, nerve biopsy may show features of both axonal loss and some demyelination. Today, because genetic testing is widely available, nerve biopsy is used less often.MalaCards+2NCBI+2

  6. Genetic testing of the DNM2 gene
    DNA testing looks for pathogenic variants in DNM2. Finding a known CMTDIB-causing mutation confirms the diagnosis and may avoid more invasive tests. Many laboratories offer CMT gene panels, and DNM2 is included as an important gene for dominant intermediate and axonal forms.MalaCards+2dnatesting.uchicago.edu+2

Electrodiagnostic tests

  1. Nerve conduction studies (NCS)
    NCS measure how fast and how strongly electrical signals travel along motor and sensory nerves. In CMTDIB, motor median nerve conduction velocities are usually in the intermediate range (about 25–45 m/s), with reduced response sizes showing axonal involvement. This pattern helps distinguish it from pure demyelinating or pure axonal CMT.MalaCards+1

  2. Electromyography (EMG)
    EMG uses a tiny needle electrode to record electrical activity in muscles at rest and during contraction. In CMTDIB, EMG typically shows chronic denervation and reinnervation in distal muscles, supporting a long-standing peripheral nerve process.MalaCards+1

  3. F-wave and late-response studies
    F-wave tests look at responses that travel from a muscle back to the spinal cord and then return. Abnormal F-waves give extra evidence of diffuse peripheral nerve involvement, which is common in hereditary neuropathies.MalaCards+1

Imaging tests

  1. Muscle MRI of legs and feet
    Magnetic resonance imaging of the lower limbs can show patterns of muscle wasting and fatty replacement. In hereditary neuropathies, specific muscle groups are affected in characteristic patterns, which can support the clinical impression and track disease over time.MalaCards+1

  2. X-rays of feet and ankles
    Plain X-rays show bone alignment, high arches, hammertoes, and joint deformities. This information helps orthopedic and rehabilitation teams plan braces, special shoes, or surgery if needed to improve walking and reduce pain.MalaCards+1

  3. Detailed eye imaging (slit-lamp examination)
    An ophthalmologist can use a slit lamp to carefully examine the lens and other eye structures. In CMTDIB associated with early cataracts, slit-lamp examination documents the lens changes and guides timing of cataract surgery when necessary.MalaCards+1

Non-pharmacological treatments

1. Physical therapy (PT)
Physical therapy is one of the core treatments for CMT-DI-B. A physical therapist designs a safe exercise program to keep joints flexible, muscles as strong as possible, and walking more stable. This often includes stretching, strengthening, balance work, and endurance training at a gentle level. PT can slow joint stiffness, delay contractures, improve posture, and make everyday tasks easier. It is usually done several times per week at first, then continued at home. Working with a therapist who understands CMT is very important.Physiopedia+2MDPI+2

2. Occupational therapy (OT)
Occupational therapists focus on the “skills for daily life.” For CMT-DI-B, OT can help with using the hands, buttoning clothes, holding cutlery, writing, typing, and using phones or computers. Therapists may suggest hand exercises, energy-saving strategies, and simple assistive devices like built-up pens, special grips, or adapted kitchen tools. The purpose is to help you remain independent at home, school, or work. OT also teaches how to protect weak muscles and joints and how to set up your environment to reduce strain and falls.Charcot-Marie-Tooth Association+2Muscular Dystrophy Association+2

3. Gait and balance training
Many people with CMT-DI-B have foot drop and balance problems. Gait and balance training means practicing safe walking, turning, and climbing stairs under supervision. Therapists may use obstacle courses, treadmill walking with supports, or balance boards. The goal is to reduce falls, improve confidence, and make walking more energy-efficient. Studies in CMT show that targeted gait and balance programs can improve walking speed, stability, and quality of life when done regularly.MDPI+1

4. Stretching and contracture prevention
Weak muscles and unbalanced pull across joints can cause shortening of tendons and fixed deformities, especially at the ankles and toes. Daily gentle stretching of calves, hamstrings, and feet helps keep joints mobile. The purpose is to prevent or delay fixed contractures that can make walking harder or require surgery later. Stretching should be slow and never painful, often combined with warm-up or warm water. Therapists teach safe methods for home use so that stretching becomes a simple, regular routine.Physiopedia+1

5. Strength and resistance training
Careful strengthening exercises can help keep remaining muscle fibers active for longer. For CMT-DI-B, light resistance with bands or body-weight exercises is usually preferred over heavy weights. The purpose is to maintain function rather than to build big muscles. Training focuses on less-affected muscle groups above the weakest areas, for example hip and core muscles to support gait. Over-exertion can worsen fatigue, so programs are adjusted slowly and monitored by a therapist.MDPI+1

6. Aerobic and endurance exercise
Low-impact aerobic activities such as walking on even ground, cycling, or swimming can improve heart fitness and reduce fatigue. For someone with CMT-DI-B, the goal is often “little but often” rather than intense workouts. Aerobic training helps control weight, reduces stress, and may protect general health, which in turn supports the nerves and muscles. It must be tailored to the person’s abilities and safety needs, with attention to foot support and balance.Physiopedia+2MDPI+2

7. Ankle-foot orthoses (AFOs) and braces
Ankle-foot orthoses are light braces worn inside or around the shoe to support weak ankles and lift the foot during walking. In CMT-DI-B, AFOs can reduce tripping, improve speed and stability, and lessen fatigue. Different styles exist, from flexible carbon braces to more supportive plastic devices. An orthotist customizes the brace based on strength, range of motion, and foot shape. Regular review is needed as the condition and foot structure change over time.PMC+2The Foundation for Peripheral Neuropathy+2

8. Custom footwear and insoles
Many people with CMT-DI-B develop high arches, claw toes, and narrow feet. Custom shoes and insoles help spread pressure, support the arch, and stabilize the ankle. This can reduce pain, skin breakdown, and balance problems. Podiatrists and orthotists may add wedges, heel lifts, or stiff soles to control unwanted motion. Proper footwear also makes it easier to use AFOs and other braces, and helps keep walking safer and less tiring.The Foundation for Peripheral Neuropathy+1

9. Walking aids (canes, crutches, walkers)
If balance or leg strength is significantly reduced, walking aids can be very helpful. A simple cane may improve stability and confidence. In more advanced stages, forearm crutches or a walker can reduce fall risk and allow longer distances. The purpose is not to “give up” on walking, but to keep walking safely and independently. Proper training in how to use the device and how to transfer safely is essential.Muscular Dystrophy Association+1

10. Hand splints and wrist supports
Weak hand and wrist muscles can make it hard to grip objects or type. Lightweight wrist splints or thumb supports can improve joint position and make tasks easier. Night splints can keep joints in a good position during sleep, helping to prevent deformities. Occupational therapists choose designs that still allow useful movement while reducing pain and fatigue.Charcot-Marie-Tooth Association+1

11. Podiatry and foot care
Because sensation may be reduced, small cuts or pressure areas on the feet can go unnoticed. Regular visits to a podiatrist help keep nails trimmed, calluses managed, and skin problems treated early. The purpose is to avoid ulcers, infections, and pain. Patients are taught to inspect their feet every day, keep skin moisturised, and choose socks and shoes that do not rub.Muscular Dystrophy Association+1

12. Pain psychology and cognitive-behavioural therapy (CBT)
Chronic pain can affect mood, sleep, and relationships. CBT and other psychological approaches teach skills to manage pain, worry, and low mood. Techniques include pacing, relaxation, and helpful thinking patterns. These methods do not “pretend the pain is not real.” Instead, they give tools that can reduce the impact of pain on daily life and can work together with medicines.PMC+1

13. Fatigue and energy-saving strategies
Fatigue is very common in CMT-DI-B. Therapists can teach pacing: spreading tasks through the day, resting before exhaustion, and planning activities in a smart order. Using aids (for example, shower chairs, trolleys, or reachers) can save energy for more meaningful tasks. The purpose is to make life more manageable, not to “push through” constant tiredness.Muscular Dystrophy Association+1

14. Home and school/work modifications
Small changes at home or school/work can have a big effect. Examples include grab bars, non-slip mats, ramps, handrails on stairs, rearranging rooms so essential items are within easy reach, and using ergonomic desks or keyboards. These changes reduce falls, joint strain, and time spent doing basic tasks, allowing more energy for study, work, and hobbies.Muscular Dystrophy Association+1

15. Vocational counseling and assistive technology
For teenagers and adults, planning future education or work is important. Vocational counselors and occupational therapists can help match job choices with physical abilities and suggest adaptations such as speech-to-text software, modified chairs, or flexible hours. Early planning can reduce stress and help maintain long-term employment or study.Muscular Dystrophy Association

16. Genetic counseling
Because CMT-DI-B is autosomal dominant, each child of an affected person has about a 50% chance of inheriting the gene change. Genetic counseling provides clear information about inheritance patterns, testing options, and family planning. It also supports emotional decision-making and helps relatives understand their own risks.Orpha+2sequencing.com+2

17. Psychological support and peer groups
Living with a chronic, visible condition can cause anxiety, sadness, or low self-esteem. Psychologists, social workers, and peer support groups (online or in person) can help people feel less alone. Sharing experiences, tips, and feelings with others who have CMT can be very powerful and improves coping and quality of life.Muscular Dystrophy Association+1

18. Sleep hygiene and positioning
Pain, cramps, and anxiety can disturb sleep. Simple sleep hygiene steps—regular bedtimes, limiting screens before bed, and creating a calm environment—may help. Some people benefit from pillows that support the legs or braces that hold the feet in a comfortable position at night. Good sleep supports mood, pain control, and daytime energy.PMC+1

19. Management of other health problems
Conditions like diabetes, obesity, thyroid disease, and vitamin deficiencies can worsen nerve function. Regular health checks and good management of these issues are important. Keeping blood sugar and weight under control, and treating low vitamin levels, may help protect the remaining nerves and muscles.ScienceDirect+1

20. Participation in clinical trials
For some people, joining a clinical trial is an option. Trials in CMT explore new medicines, gene therapy, and devices. Participation helps move science forward and may give access to promising treatments, but there are also risks and strict rules. Trial information is usually available through specialist centers, patient organizations, and clinical trial registries.CMT Research Foundation+2Charcot-Marie-Tooth Association+2


Drug treatments for symptoms

Very important: no medicine currently cures CMT-DI-B. Most drugs are used to treat symptoms such as neuropathic pain, muscle cramps, mood disorders, or sleep problems. Many are approved by the FDA for other neuropathic pain conditions (like diabetic nerve pain), not specifically for CMT, but doctors may use them when they think they are appropriate.PMC+2PMC+2

Doses are always individualized by a doctor. For a teenager, dosing can be very different from adult dosing. Never start, stop, or change doses without your doctor’s advice.

Below, “time” refers to how often the drug is usually taken (for example, once or twice daily), based mainly on FDA prescribing information for neuropathic pain or pain conditions.FDA Access Data+3FDA Access Data+3FDA Access Data+3

1. Gabapentin
Gabapentin is an anti-seizure medicine widely used for neuropathic pain. It calms overactive nerve cells by changing how calcium channels work in the nervous system. In CMT-DI-B, it may reduce burning, tingling, and shooting pains in the feet and hands. It is usually taken several times a day, with the dose slowly increased to balance pain relief and side effects like sleepiness and dizziness. Gabapentin is approved for post-herpetic neuralgia; its use in CMT is based on experience in many neuropathic pain conditions.FDA Access Data+2Government of British Columbia+2

2. Pregabalin
Pregabalin is related to gabapentin and is also used for neuropathic pain. It binds to certain calcium channels in nerve cells, reducing the release of pain-signaling chemicals. The FDA has approved pregabalin for diabetic peripheral neuropathic pain and other conditions, so doctors may consider it for painful CMT. It is usually taken two or three times a day, starting at a low dose. Common side effects include dizziness, weight gain, and swelling. Careful monitoring is needed, particularly when used with other sedating drugs.FDA Access Data+2PMC+2

3. Duloxetine
Duloxetine is a serotonin-noradrenaline reuptake inhibitor (SNRI) antidepressant with strong evidence for nerve pain in diabetes and for chronic musculoskeletal pain. It boosts certain brain chemicals that help damp down pain signals and improve mood. In CMT-DI-B, it may be chosen for people who have both pain and depression or anxiety. It is usually taken once daily. Nausea, dry mouth, and sleep changes are possible side effects. Liver disease and heavy alcohol use are important reasons to be cautious.Psychopharmacology Institute+3PMC+3FDA Access Data+3

4. Amitriptyline
Amitriptyline is an older tricyclic antidepressant commonly used in low doses for nerve pain. It blocks the reuptake of serotonin and noradrenaline and also acts on several other receptors that influence pain and sleep. In CMT-DI-B, it may help with burning pain and improve sleep quality. It is usually taken once at night. Side effects can include dry mouth, constipation, dizziness, and daytime drowsiness. It must be used cautiously in heart disease and in combination with other medicines that affect the heart rhythm.ScienceDirect+2Nevada Medicaid+2

5. Nortriptyline
Nortriptyline is another tricyclic antidepressant that often has fewer sedating and anticholinergic side effects than amitriptyline. It works in a similar way by boosting pain-modulating brain chemicals. Doctors may choose it for teenagers or adults who cannot tolerate amitriptyline but still need a tricyclic. It is usually taken once daily, often at night. Monitoring for heart rhythm changes, mood shifts, and interactions with other drugs is important.Nevada Medicaid+1

6. Venlafaxine
Venlafaxine is another SNRI that can help some people with nerve pain and depression. It increases serotonin and noradrenaline in the brain and spinal cord, which can reduce the intensity of pain signals and improve emotional coping. It is usually taken once or twice daily in extended-release form. Side effects can include nausea, sweating, increased blood pressure, and withdrawal symptoms if stopped suddenly. It is more often used when duloxetine is not suitable or not effective.Nevada Medicaid+1

7. Carbamazepine
Carbamazepine is an anti-seizure medicine that stabilizes over-excited nerve membranes by blocking sodium channels. It is especially useful for sudden, shock-like pains, such as those in trigeminal neuralgia, but some doctors may try it for similar neuropathic pain patterns in CMT-DI-B. It is usually taken two or three times daily. It can cause dizziness, low sodium, and rarely serious blood or liver problems, so regular blood tests and medical supervision are essential.Nevada Medicaid+1

8. Oxcarbazepine
Oxcarbazepine is related to carbamazepine with a similar action on sodium channels but often a somewhat different side-effect profile. It may be used when carbamazepine is not tolerated. In CMT-DI-B, it is an option for certain difficult neuropathic pain patterns. It is usually taken twice daily. Like carbamazepine, it can cause dizziness and low sodium and requires monitoring.Nevada Medicaid+1

9. Topical lidocaine 5% patches
Lidocaine patches deliver a local anesthetic through the skin to calm painful nerves in a limited area, such as part of the foot. They are FDA-approved for post-herpetic neuralgia and used more widely for localized neuropathic pain. In CMT-DI-B, patches may be used on areas with strong burning or allodynia (pain from light touch). They are usually applied for up to 12 hours in 24 hours to intact skin. Side effects are mainly local skin reactions.FEP Blue+3FDA Access Data+3FDA Access Data+3

10. High-strength capsaicin 8% patch
Capsaicin 8% patches (for example Qutenza) act on TRPV1 receptors in pain nerves and can reduce nerve activity after a single supervised application. They are approved for post-herpetic neuralgia and diabetic peripheral neuropathy of the feet. In CMT-DI-B, specialist pain clinics may consider them for severe localized neuropathic pain, though evidence is limited. Application can cause strong burning during the procedure, so it is done with local anaesthetic and monitoring.Molina Healthcare+4FDA Access Data+4FDA Access Data+4

11. Tramadol
Tramadol is a weak opioid with additional SNRI-like activity used for moderate to severe pain when other options fail. It may help mixed nociceptive and neuropathic pain in CMT-DI-B, but it has risks of dependence, withdrawal, and serious side effects, including seizures. It is generally reserved for short-term use under close supervision. In the United States, tramadol is a controlled substance, and careful dosing and monitoring are required, especially in young people.FDA Access Data+2FDA Access Data+2

12. Non-steroidal anti-inflammatory drugs (NSAIDs) – e.g., ibuprofen, naproxen
NSAIDs reduce pain and inflammation in joints and muscles but do not treat nerve damage itself. In CMT-DI-B, they can be useful for aches from altered walking mechanics, joint strain, or after minor injuries. They are usually taken with food and for limited periods to lower the risk of stomach, kidney, and heart side effects. A doctor will choose an appropriate drug and schedule based on age and health.ScienceDirect+1

13. Simple analgesics – paracetamol (acetaminophen)
Paracetamol is often used as a first-line pain reliever. It is gentle on the stomach and does not cause dependence but can damage the liver in high doses. In CMT-DI-B, paracetamol may be combined with other options for mild day-to-day discomfort. The timing and maximum daily dose depend on age, weight, and liver health, and must be followed carefully.Nevada Medicaid

14. Baclofen
Baclofen is a muscle relaxant acting on GABA-B receptors. It is sometimes used for spasticity or painful muscle cramps. While spasticity is less typical in CMT than in some other neurological conditions, some individuals report cramps that respond to baclofen. It is usually taken several times a day, with slow dose increases. Side effects include sleepiness and weakness, so careful monitoring is needed.ScienceDirect+1

15. Tizanidine
Tizanidine is another muscle relaxant that may help cramps and muscle tone problems in selected cases. It works by reducing excitatory signals in the spinal cord. It is usually taken in divided doses, with careful adjustment to avoid excessive sleepiness and low blood pressure. It is used cautiously and typically only when other measures fail.ScienceDirect+1

16. Magnesium supplements (as a prescribed medicine)
Some doctors prescribe magnesium in medicinal doses to help with muscle cramps or restless legs. Magnesium is involved in nerve and muscle function. In people with CMT-DI-B who are low in magnesium, correction may improve cramp frequency, though evidence is limited. Excess magnesium from tablets can cause diarrhea and, in kidney disease, dangerous levels, so medical supervision is needed.ScienceDirect

17. Antidepressants (SSRIs/SNRIs) for mood and coping
Beyond duloxetine and venlafaxine, other antidepressants such as sertraline or escitalopram may be used when depression or anxiety is significant. While they are not primary pain medicines, better mood can reduce perceived pain and improve activity. Choice and dose depend on age, other conditions, and drug interactions. Regular follow-up is needed to check benefit and side effects.Psychopharmacology Institute+1

18. Sleep medicines (used cautiously)
Short-term sleep medicines may be prescribed if pain or worry severely disrupts sleep. Examples include certain antihistamines or melatonin in some regions. These are usually used for a short time while non-drug sleep strategies are applied. Sedating drugs can increase fall risk and daytime fatigue, so doctors weigh risks and benefits carefully, especially in teenagers.Nevada Medicaid+1

19. Topical NSAID gels
Topical NSAID gels applied to painful joints or muscle areas can reduce local pain with less systemic exposure than tablets. In CMT-DI-B, they may help ankle or foot joint aches linked with abnormal gait or deformities. They still carry some risk of side effects but are often safer than long-term oral NSAIDs.ScienceDirect+1

20. Medications for co-existing conditions
Treating other conditions that worsen nerve health—such as diabetes, high cholesterol, or vitamin deficiencies—is also part of “drug treatment.” Good blood sugar control, appropriate vitamin replacement, and safe management of blood pressure and lipids all help protect the remaining nerves. The exact drugs depend on the individual’s medical history and are handled by the broader medical team.ScienceDirect+1


Dietary molecular supplements

Evidence for supplements specifically in CMT-DI-B is limited. Most data come from general neuropathy research. Always discuss supplements with your doctor, especially to avoid interactions.ScienceDirect+1

1. Vitamin B12
Vitamin B12 is vital for myelin (nerve covering) and red blood cell production. Low B12 can cause neuropathy on its own. In someone with CMT-DI-B, correcting B12 deficiency will not cure the genetic disease, but it can prevent extra damage and might improve numbness or tingling. B12 can be taken as tablets or injections, with dose guided by blood tests. Very high doses are usually safe but still should be supervised by a doctor.ScienceDirect+1

2. Folate (vitamin B9)
Folate works with B12 in nerve and blood cell health. Low folate can worsen fatigue and nerve problems. Supplementation is considered when blood levels are low or diets are poor in leafy greens and fortified grains. The dose is tailored to lab results and age. Too much folic acid may hide B12 deficiency, so doctors usually check both vitamins together.ScienceDirect+1

3. Vitamin B1 (thiamine)
Thiamine deficiency can cause a severe neuropathy called beriberi. For people with CMT-DI-B who also have poor nutrition or high alcohol intake, thiamine supplementation may prevent a second neuropathy on top of CMT. Doses vary from low daily dietary supplements to higher medical doses for proven deficiency. It is generally safe but should still be taken under medical advice.ScienceDirect

4. Alpha-lipoic acid
Alpha-lipoic acid is an antioxidant that has been studied in diabetic neuropathy, with some trials showing improved pain and nerve function at specific doses. It may help by reducing oxidative stress in nerves. For CMT-DI-B, evidence is weak, but some clinicians consider a trial in adults. Typical regimens in studies use regular daily dosing for several months. Side effects can include stomach upset and low blood sugar in diabetes.Government of British Columbia+1

5. Coenzyme Q10 (CoQ10)
CoQ10 helps mitochondria (the “power plants” of cells) produce energy. In some mitochondrial or neuromuscular diseases, CoQ10 may improve fatigue and exercise tolerance. For CMT-DI-B, strong evidence is lacking, but it is sometimes tried, especially if there is suspected mitochondrial involvement. Doses vary and are taken with food to improve absorption. Mild stomach upset can occur.ScienceDirect+1

6. Omega-3 fatty acids (fish oil)
Omega-3s have anti-inflammatory and possible nerve-protective effects. In general populations, they may support heart and brain health. For CMT-DI-B, they may help overall health and possibly nerve function, though data are indirect. They are taken as capsules or through oily fish in the diet. High doses can increase bleeding risk, especially with blood-thinning medications.ScienceDirect+1

7. Vitamin D
Vitamin D is important for bone strength and immune function. People with chronic disability or little sunlight are often deficient. Correcting low vitamin D helps prevent fractures from falls and may support muscle function. Doses range from daily low doses to higher weekly or monthly doses, depending on blood levels and age. Too much vitamin D can be harmful, so monitoring is needed.ScienceDirect+1

8. Vitamin E
Vitamin E is an antioxidant. Severe deficiency can cause neurological problems, including ataxia and neuropathy. Supplementation is clearly helpful when levels are low, but routine high-dose vitamin E for everyone with CMT-DI-B is not proven. Doses are chosen based on blood levels and diet. Very high doses can affect blood clotting, so medical advice is necessary.ScienceDirect+1

9. L-carnitine
L-carnitine helps move fatty acids into mitochondria for energy production. Some neuromuscular disorders with mitochondrial dysfunction respond to it. In CMT-DI-B, evidence is limited, but it is occasionally tried in adults with significant fatigue or muscle pain. Typical dosing involves divided doses through the day with meals. Side effects can include fishy body odour and stomach upset.ScienceDirect+1

10. Multivitamin tailored to neuropathy risk
Sometimes rather than many separate pills, doctors recommend a balanced multivitamin covering B vitamins, vitamin D, and trace elements like zinc. The aim is to prevent deficiencies that could “add on” extra nerve damage. The exact product and dose should be chosen by a health professional, as over-the-counter products vary widely.ScienceDirect+1


Regenerative, immune and stem-cell-related approaches

For CMT-DI-B there are no approved stem cell or regenerative “drugs” yet. However, several research approaches are being explored.Labiotech.eu+4PMC+4institut-myologie.org+4

1. Gene therapy for specific CMT subtypes
Gene therapy aims to correct the faulty gene in nerve cells. Different strategies include replacing a missing gene, silencing an overactive gene, or editing the gene using new tools. Early trials in other CMT subtypes (such as CMTX and CMT2) show promise in animals and small human studies, but safety, dosing, and long-term effects are still being tested. For CMT-DI-B, gene therapy remains experimental and available only in dedicated trials.Charcot-Marie-Tooth Association+3CMT Research Foundation+3institut-myologie.org+3

2. Plasmid-based gene medicines
Some research uses plasmids (small DNA circles) instead of viral vectors to deliver helpful genes. A trial mentioned plasmid gene therapy improving nerve and muscle function in early CMT clinical testing. The idea is that plasmids may be safer for repeated dosing and could be adjusted more easily. Again, these are in early trial stages and are not available for standard care.Charcot-Marie-Tooth Disease+2Charcot-Marie-Tooth Association+2

3. Small-molecule therapies targeting ion channels or neuromuscular junctions
Experimental drugs such as NMD670 aim to improve neuromuscular junction function or ion channel behavior to enhance muscle strength and endurance in CMT. These molecules are being tested in phase 2 trials and may offer a way to improve weakness without directly fixing the gene. For now, they are only available in research settings.Labiotech.eu+1

4. Stem cell transplantation concepts
Scientists are exploring whether stem cells could support or repair peripheral nerves by releasing growth factors or turning into supportive cells like Schwann cells. So far, most work is in animals or very early studies. There is no approved stem cell transplant for CMT-DI-B. Risks, including immune reactions, tumor formation, and unknown long-term effects, mean these treatments must remain inside regulated trials.institut-myologie.org+2PMC+2

5. Neurotrophic growth factor therapies
Neurotrophic factors are proteins that help nerves grow and survive. Researchers are trying to deliver them via injections, gene therapy, or engineered cells to support damaged nerves in CMT. Although some animal data are encouraging, challenges include side effects and getting enough drug to the right nerves. None are approved yet for CMT-DI-B.PMC+2PMC+2

6. Immune-modulating treatments (for overlapping conditions)
CMT-DI-B itself is not an autoimmune disease, so general “immune booster” drugs are not standard. However, if a person with CMT also has an autoimmune neuropathy or another immune disorder, doctors may use treatments like intravenous immunoglobulin (IVIg) or steroids for that separate condition. These powerful therapies are reserved for carefully diagnosed cases and do not treat the genetic cause of CMT-DI-B.ScienceDirect+1


Surgical treatments

1. Tendon transfer surgery
In tendon transfer, a stronger tendon is moved to take over the function of a very weak muscle, usually around the ankle or toes. In CMT-DI-B, this can correct foot drop or claw toes, improving walking and shoe fit. The surgery is done under anesthesia, with a hospital stay and later physical therapy. The aim is to improve alignment and function, not to cure the nerve disease, so timing and careful selection are crucial.ScienceDirect+1

2. Osteotomy of the foot (bone reshaping)
People with CMT often have high arches (pes cavus) and twisted feet. Osteotomy involves cutting and reshaping foot bones to create a more balanced, plantigrade foot that sits flat on the ground. Plates, screws, or pins hold the bones in the new position while they heal. This procedure can reduce pain, improve stability, and make brace use easier, but it needs careful planning and long rehabilitation.ScienceDirect+1

3. Joint fusion (arthrodesis)
In severe deformities, some joints in the foot or ankle may be fused so they no longer move. This can reduce pain and stop unstable joints from collapsing. The downside is loss of movement at the fused joint, which may increase stress on other joints. Fusion is usually reserved for advanced cases and considered only after more conservative options fail.ScienceDirect+1

4. Soft-tissue release surgery
Soft-tissue procedures lengthen tight tendons or release contracted tissues, especially at the heel cord (Achilles) or toes. These surgeries can be done alone in milder deformities or combined with bone procedures. The purpose is to increase range of motion, improve foot position, and allow better brace and shoe fit. Postoperative physiotherapy is important to maintain the gains.ScienceDirect+1

5. Nerve decompression (e.g., carpal or tarsal tunnel release)
Sometimes nerves already weakened by CMT get further compressed at tight passages like the wrist (carpal tunnel) or ankle (tarsal tunnel). Decompression surgery opens the tunnel to give the nerve more space. This can reduce pain, tingling, and weakness caused by compression. It does not reverse the underlying CMT damage but may stop additional loss.ScienceDirect+1


Preventions and risk reduction

Because CMT-DI-B is genetic, we cannot fully “prevent” it. But we can prevent extra damage and complications:Wikipedia+2ScienceDirect+2

  1. Avoid nerve-toxic medicines when possible (some chemotherapy drugs, high-dose certain antibiotics); always remind doctors you have CMT.

  2. Treat other diseases like diabetes, thyroid disorders, and vitamin deficiencies promptly.

  3. Protect your feet with daily checks, proper footwear, and quick treatment of cuts or blisters.

  4. Maintain healthy body weight to reduce stress on weak muscles and joints.

  5. Exercise regularly but gently to keep muscles and joints working without over-fatigue.

  6. Use braces and aids early when recommended to prevent falls and deformities.

  7. Avoid smoking and heavy alcohol use, which harm nerves and overall health.

  8. Use home safety measures (grab bars, non-slip mats, good lighting) to prevent falls.

  9. Get recommended vaccines (like flu and pneumonia) to reduce severe illnesses that could temporarily worsen weakness.

  10. Seek genetic counseling for family planning and early diagnosis in relatives.


When to see doctors

You should see your neurologist and rehabilitation team regularly, even if symptoms are stable, to adjust braces, therapy, and pain management. See a doctor soon (within days) if you notice: suddenly worse weakness, new severe pain, frequent falls, skin sores on the feet, or big changes in walking.Muscular Dystrophy Association+1

Go to urgent or emergency care if you have:

  • Sudden severe weakness in legs or arms that makes walking or standing impossible.

  • Loss of bladder or bowel control with new back pain.

  • High fever and spreading redness in the foot or leg suggesting infection.

  • Serious injury from a fall, such as suspected fracture or head injury.

Prompt review can prevent long-term complications and help your team adjust treatment.


Diet: what to eat and what to avoid

What to eat (points)ScienceDirect+1

  1. Balanced meals with whole grains, lean proteins (fish, poultry, beans), and plenty of vegetables and fruits to support nerves, muscles, and weight control.

  2. Foods rich in B-vitamins like whole grains, eggs, dairy, and leafy greens to reduce the risk of deficiencies that can worsen nerve problems.

  3. Healthy fats from fish, nuts, seeds, and olive oil to support heart and brain health.

  4. Adequate calcium and vitamin D from dairy or fortified alternatives plus safe sun exposure or supplements if prescribed, to keep bones strong.

  5. Enough fluids to prevent dehydration and support general health, especially when active or in hot climates.

What to avoid or limit (points)ScienceDirect+1

  1. Large amounts of alcohol, which directly damages nerves and worsens balance and falls.

  2. Highly processed foods high in sugar and unhealthy fats, which promote weight gain and metabolic disease.

  3. Crash diets or extremely restrictive eating patterns that can cause vitamin deficiencies.

  4. Excess caffeine, which can worsen insomnia and sometimes cramps in sensitive people.

  5. High-salt, high-fat fast food that increases blood pressure and heart disease risk, further limiting mobility.

A dietitian familiar with neuromuscular disorders can give a personalized plan.


Frequently asked questions (FAQs)

1. Is CMT-DI-B life-threatening?
CMT-DI-B is usually slowly progressive and mainly affects movement and sensation in the limbs. Most people have a normal life span, but disability can vary from mild to significant. Severe respiratory involvement is uncommon in many CMT types but can occur in some forms, so regular medical follow-up is still important.Orpha+2MalaCards+2

2. Can CMT-DI-B be cured?
At present there is no cure and no approved drug that fixes the underlying gene. Treatment focuses on maximizing function, reducing pain, and preventing complications. Research into gene therapy and other advanced treatments is ongoing and offers hope for the future.PMC+2Charcot-Marie-Tooth Association+2

3. Will exercise make my nerves worse?
Appropriate, gentle exercise usually helps, as long as it is supervised and not excessive. Over-training to exhaustion can increase fatigue and soreness, but regular, moderate activity supports muscles, joints, and general health. A therapist who knows CMT can design a safe program.Physiopedia+2MDPI+2

4. Are there medicines I should never take?
Some medicines are known to be toxic to peripheral nerves (for example, certain chemotherapy drugs and very high doses of some antibiotics). Before any new medicine, tell your doctor you have CMT. They can check drug safety lists and choose safer alternatives when possible.ScienceDirect+1

5. Does every child of an affected parent get CMT-DI-B?
No. Because the condition is autosomal dominant, each child has a 50% chance of inheriting the gene change. Some families show variable severity even with the same mutation, so genetic counseling is recommended for more detailed discussions.Orpha+2sequencing.com+2

6. Can diet alone treat CMT-DI-B?
Diet cannot cure or reverse the genetic nerve damage. However, good nutrition supports overall health, bone strength, and weight control, which indirectly improves mobility, balance, and energy. It also helps prevent additional diseases like diabetes that can further damage nerves.ScienceDirect+1

7. Why do I need braces if I can still walk without them?
Braces and orthoses are often recommended early to prevent falls and deformities, not only when walking is already very difficult. They can reduce strain on weak muscles, save energy, and keep you active for longer. Many people find their walking becomes smoother and less tiring once they adjust to braces.PMC+2The Foundation for Peripheral Neuropathy+2

8. Will surgery stop my CMT from getting worse?
Surgery can correct deformities, improve foot alignment, and reduce pain, but it does not stop the underlying nerve disease. The nerves can still slowly worsen over time. However, better foot shape and joint stability may increase mobility and comfort for many years.ScienceDirect+1

9. Is pain a normal part of CMT-DI-B?
Many people with CMT report neuropathic pain (burning, tingling, shooting) and musculoskeletal pain from altered walking. Pain is common but not “something you must just accept.” Many non-drug and drug treatments can reduce pain, and a pain specialist can help find a safe, balanced plan.PMC+2ScienceDirect+2

10. Can teenagers with CMT-DI-B play sports?
Many can take part in adapted or lower-impact sports, especially with good footwear, braces, and guidance from therapists and doctors. Swimming and cycling are often ideal because they stress the joints less. Contact or high-impact sports may carry higher injury risks and should be discussed with the care team.MDPI+1

11. Are stem cell clinics on the internet safe options?
Most “stem cell cures” advertised online for neuropathy are unproven and potentially dangerous. They may not be properly regulated, can be very expensive, and can cause serious complications. At present, stem cell approaches for CMT-DI-B should only be accessed through recognized clinical trials in major research centers.institut-myologie.org+2PMC+2

12. How often should I see a neurologist?
The schedule depends on your age and severity. Many people benefit from yearly reviews at a minimum, with more frequent visits during periods of change (growth spurts, new symptoms, or before and after surgery). Regular follow-up helps adjust braces, therapy, and pain plans before problems become severe.Muscular Dystrophy Association+1

13. Can pregnancy worsen CMT-DI-B?
In some women with CMT, pregnancy can temporarily increase weakness or balance problems because of weight gain and hormonal changes, but many have safe pregnancies with proper care. Obstetricians and neurologists usually work together to plan delivery and manage pain safely. Genetic counseling before pregnancy can help families understand inheritance risks.Wikipedia+2ScienceDirect+2

14. Will I end up in a wheelchair?
Some people with CMT-DI-B eventually need a wheelchair for longer distances, especially as they get older. This is not a failure; it is a tool to maintain independence and conserve energy. Early use for long trips can actually keep you more active overall, while still walking shorter distances with aids.Muscular Dystrophy Association+1

15. What is the most important thing I can do now?
The most important steps are: stay connected with a knowledgeable medical team, keep moving safely with PT/OT, protect your feet, manage pain early, maintain a healthy lifestyle, and seek emotional and social support. Combined, these actions can greatly improve day-to-day life while research continues to search for disease-modifying treatments.Muscular Dystrophy Association+2PMC+2

Disclaimer: Each person’s journey is unique, treatment planlife stylefood habithormonal conditionimmune systemchronic disease condition, geological location, weather and previous medical  history is also unique. So always seek the best advice from a qualified medical professional or health care provider before trying any treatments to ensure to find out the best plan for you. This guide is for general information and educational purposes only. Regular check-ups and awareness can help to manage and prevent complications associated with these diseases conditions. If you or someone are suffering from this disease condition bookmark this website or share with someone who might find it useful! Boost your knowledge and stay ahead in your health journey. We always try to ensure that the content is regularly updated to reflect the latest medical research and treatment options. Thank you for giving your valuable time to read the article.

The article is written by Team RxHarun and reviewed by the Rx Editorial Board Members

Last Updated: December 23, 2025.

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