Amyotrophic lateral sclerosis

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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 amyotrophic lateral sclerosis?

ALS (amyotrophic lateral sclerosis) is a degenerative disorder affecting upper motor neurons in the brain and lower motor neurons in the brainstem and spinal cord. Symptoms include progressive weakness, atrophy, fasciculation, dysphagia, and eventual paralysis of respiratory function.

Common symptoms reported by people with amyotrophic lateral sclerosis

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 amyotrophic lateral sclerosis

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

(Rilutek)
Type
Prescription Drug
How many have tried
367
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
148
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
89
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
78
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
49
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
29
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
28
Treatment name(s)

(Cannabidiol CBD oil)
Type
Other
How many have tried
25
Tried for
amyotrophic lateral sclerosis (22) anxious mood (7)
3 more
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
25
Treatment name(s)
Type
Supplement
How many have tried
24

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

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

(Rilutek)
Perceived effectiveness
for amyotrophic lateral sclerosis (315 evaluations)
Side effects
fatigue nausea 56 more
Total evaluations
318
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (546 evaluations)
Side effects
constipation abdominal bloating 33 more
Total evaluations
547
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (69 evaluations)
Side effects
fatigue breathing difficulty 27 more
Total evaluations
69
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiffness/spasticity (73 evaluations)
Side effects
drowsiness dizziness 19 more
Total evaluations
77
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (47 evaluations)
Side effects
balance problems sexual dysfunction 11 more
Total evaluations
54
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for amyotrophic lateral sclerosis (14 evaluations)
Side effects
dry mouth difficulty staying asleep 2 more
Total evaluations
17
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (21 evaluations)
Side effects
diarrhea acid reflux 2 more
Total evaluations
22
Treatment name(s)

(Cannabidiol CBD oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (18 evaluations)
Side effects
drowsiness
Total evaluations
32
Tried for
amyotrophic lateral sclerosis (22) anxious mood (7)
3 more
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (12 evaluations)
Side effects
Total evaluations
14
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (31 evaluations)
Side effects
diarrhea acidosis 2 more
Total evaluations
33
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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

  • 22 new patients joined this month
  • 12797 say ALS is their primary condition

Age
Age Proportion # of patients
<20 3
20s 113
30s 530
40s 1216
50s 2715
60s 3492
70+ 2936
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 40
20-29 years 233
30-39 years 737
40-49 years 1460
50-59 years 1856
60-69 years 1275
70+ years 328

Distribution of sex

Sex
Sex Proportion # of patients
Male 5738
Female 4637

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6582
Not Diagnosed 300

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