Charcot-Marie-Tooth disease

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is Charcot-Marie-Tooth disease?

Charcot-Marie-Tooth disease is an inherited disorder of nerves. It is characterized by loss of muscle tissue and touch sensation, predominantly in the feet and legs but also in the hands and arms in the advanced stages of disease. Subtypes are categorized by the genetic mutation.

Common symptoms reported by people with Charcot-Marie-Tooth disease

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
Last updated:

Treatments taken by people with Charcot-Marie-Tooth disease

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Home Physical Therapy)
Type
Physical Therapy
How many have tried
3
Treatment name(s)

(Leg brace)
Type
Equipment
How many have tried
2
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(BuSpar)
Type
Prescription Drug
How many have tried
1
Tried for
depressed mood (1)
Treatment name(s)

(Codeine Contin)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Arcoxia)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Ativan)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)
Treatment name(s)

(TENS Transcutaneous Electrical Nerve Stimulation)
Type
Procedures
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Outpatient Occupational Therapy)
Type
Physical Therapy
How many have tried
1
Treatment name(s)

(Percocet)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)

Data from patients with Charcot-Marie-Tooth disease, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with Charcot-Marie-Tooth disease

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Home Physical Therapy)
Perceived effectiveness
for Charcot-Marie-Tooth disease (2 evaluations)
Side effects
temporary increased pain
Total evaluations
2
Treatment name(s)

(Leg brace)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (1 evaluation)
Side effects
excessive dry mouth
Total evaluations
1
Tried for
pain (1)
Treatment name(s)

(BuSpar)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood (1)
Treatment name(s)

(Codeine Contin)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Arcoxia)
Perceived effectiveness
for pain (2 evaluations)
Side effects
stomach pain
Total evaluations
2
Tried for
pain (1)
Treatment name(s)

(Ativan)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
anxious mood (1)
Treatment name(s)

(TENS Transcutaneous Electrical Nerve Stimulation)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Outpatient Occupational Therapy)
Perceived effectiveness
for Charcot-Marie-Tooth disease (1 evaluation)
Side effects
Total evaluations
1
Treatment name(s)

(Percocet)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with Charcot-Marie-Tooth disease, who reported starting treatments within the last 5 years.
Last updated:

Who has Charcot-Marie-Tooth disease on PatientsLikeMe?


Age
Age Proportion # of patients
<20 9
20s 24
30s 38
40s 48
50s 70
60s 41
70+ 30
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 80
20-29 years 17
30-39 years 10
40-49 years 16
50-59 years 7
60-69 years 3
70+ years 2

Distribution of sex

Sex
Sex Proportion # of patients
Male 98
Female 160

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 144
Not Diagnosed 12

These charts show data from Charcot-Marie-Tooth disease patients who have completed their condition history
Last updated: