Multiple exostoses

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What is multiple exostoses?

Hereditary multiple exostoses is a condition in which people develop multiple benign (noncancerous) bone tumors called exostoses, most often by the time they are 12 years old. The number of exostoses and the bones on which they are located vary greatly among affected individuals.

Common symptoms reported by people with multiple exostoses

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.
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Treatments taken by people with multiple exostoses

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

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

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

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

(Oxycodone IR)
Type
Prescription Drug
How many have tried
1
Tried for
multiple exostoses (1)
Treatment name(s)

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

Data from patients with multiple exostoses, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with multiple exostoses

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

(Codeine Contin)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (1)
Treatment name(s)

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

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

(Oxycodone IR)
Perceived effectiveness
for multiple exostoses (1 evaluation)
Side effects
drowsiness fatigue 1 more
Total evaluations
1
Tried for
multiple exostoses (1)
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (1 evaluation)
Side effects
anxious mood depressed mood 2 more
Total evaluations
1
Tried for
pain (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with multiple exostoses, who reported starting treatments within the last 5 years.
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Who has multiple exostoses on PatientsLikeMe?


Age
Age Proportion # of patients
<20 7
20s 15
30s 15
40s 13
50s 10
60s 5
70+ 0
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 25
20-29 years 0
30-39 years 1
40-49 years 0
50-59 years 1
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 21
Female 44

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 29
Not Diagnosed 1

These charts show data from multiple exostoses patients who have completed their condition history
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