Neurosarcoidosis

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What is neurosarcoidosis?

Neurosarcoidosis is the chronic inflammation of abnormal cell deposits within the central nervous system (brain, spinal cord, and peripheral nerves). Some symptoms include facial muscle weakness, vision and hearing impairments, and changes in mood and behavior.

Common symptoms reported by people with neurosarcoidosis

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 neurosarcoidosis

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

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

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

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

(Remicade)
Type
Prescription Drug
How many have tried
1
Tried for
neurosarcoidosis (1)
Treatment name(s)

(Apo-Methotrexate)
Type
Prescription Drug
How many have tried
1
Tried for
neurosarcoidosis (1)
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
1
Tried for
neurosarcoidosis (1)

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

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

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

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

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

(Remicade)
Perceived effectiveness
for neurosarcoidosis (3 evaluations)
Side effects
muscle pain nausea 1 more
Total evaluations
3
Tried for
neurosarcoidosis (1)
Treatment name(s)

(Apo-Methotrexate)
Perceived effectiveness
for neurosarcoidosis (2 evaluations)
Side effects
fatigue mouth sores (ulcers) 2 more
Total evaluations
2
Tried for
neurosarcoidosis (1)
Treatment name(s)

(Deltasone)
Perceived effectiveness
for neurosarcoidosis (1 evaluation)
Side effects
headaches heart palpitations 2 more
Total evaluations
1
Tried for
neurosarcoidosis (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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


Age
Age Proportion # of patients
<20 0
20s 2
30s 11
40s 14
50s 22
60s 12
70+ 2
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1
20-29 years 5
30-39 years 10
40-49 years 8
50-59 years 6
60-69 years 0
70+ years 0

Sex

Distribution of sex

65% Female
35% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 33
Not Diagnosed 2

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