Stiff person syndrome

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What is stiff person syndrome?

Stiff person syndrome is an uncommon disorder characterized by progressive muscle stiffness, rigidity, and spasm involving the axial muscles, resulting in severely impaired ambulation.

Common symptoms reported by people with stiff person syndrome

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 stiff person syndrome

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

(Valium)
Type
Prescription Drug
How many have tried
5
Tried for
stiff person syndrome (5)
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
3
Tried for
stiff person syndrome (3)
Treatment name(s)

(Gammaglobulin (IVIg))
Type
Prescription Drug
How many have tried
2
Tried for
stiff person syndrome (2)
Treatment name(s)

(Home Physical Therapy)
Type
Physical Therapy
How many have tried
2
Tried for
stiff person syndrome (2)
Treatment name(s)

(Lioresal)
Type
Prescription Drug
How many have tried
1
Tried for
stiff person syndrome (1)
Treatment name(s)

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

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

(Advil)
Type
Over the Counter Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

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

(Rituxan)
Type
Prescription Drug
How many have tried
1
Tried for
stiff person syndrome (1)

Data from patients with stiff person syndrome, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with stiff person syndrome

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

(Valium)
Perceived effectiveness
for stiff person syndrome (1 evaluation)
Side effects
fatigue
Total evaluations
2
Tried for
stiff person syndrome (5)
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiff person syndrome (2 evaluations)
Side effects
depressed mood headaches 2 more
Total evaluations
2
Tried for
stiff person syndrome (3)
Treatment name(s)

(Gammaglobulin (IVIg))
Perceived effectiveness
for stiff person syndrome (1 evaluation)
Side effects
headaches
Total evaluations
1
Tried for
stiff person syndrome (2)
Treatment name(s)

(Home Physical Therapy)
Perceived effectiveness
for stiff person syndrome (3 evaluations)
Side effects
Total evaluations
3
Tried for
stiff person syndrome (2)
Treatment name(s)

(Lioresal)
Perceived effectiveness
for stiff person syndrome (1 evaluation)
Side effects
fatigue Hospitalization 1 more
Total evaluations
2
Tried for
stiff person syndrome (1)
Treatment name(s)

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

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

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

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

(Rituxan)
Perceived effectiveness
for stiff person syndrome (2 evaluations)
Side effects
tiredness
Total evaluations
2
Tried for
stiff person syndrome (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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


Age
Age Proportion # of patients
<20 1
20s 2
30s 15
40s 22
50s 29
60s 20
70+ 7
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 2
20-29 years 6
30-39 years 8
40-49 years 20
50-59 years 7
60-69 years 4
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 31
Female 68

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 47
Not Diagnosed 9

These charts show data from stiff person syndrome patients who have completed their condition history
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