Myths and facts
Short answers to common misconceptions about ALS.
Common myths
ALS is always inherited.
Most cases are sporadic; inherited forms exist but are not the majority.
Fasciculations always mean ALS.
They can occur in healthy people and in many other conditions; they do not diagnose ALS by themselves.
Everyone starts with the same symptoms.
ALS may begin in a limb, with bulbar symptoms, or less commonly in other ways.
ALS always progresses at the same speed.
Progression varies widely from person to person.
ALS can be diagnosed with one test.
Diagnosis requires clinical assessment and tests interpreted together.
EMG alone proves ALS.
EMG is important but must fit the clinical picture and exclusion of other causes.
Tofersen is for all ALS patients.
Tofersen is intended for SOD1-associated ALS only.
ALS is contagious.
ALS is not contagious and is not spread by contact.
Nothing can be done for quality of life.
Multidisciplinary care, respiratory support, nutrition, communication tools and home adaptation can matter greatly.
Statistics predict my exact future.
Statistics describe groups, not the exact course for one person.
Lyme disease is proven to cause ALS.
There are hypotheses and cases, but no proof that Lyme disease causes most ALS cases.
Heavy metals or mold explain all ALS cases.
These factors are discussed and studied but are not proven universal causes.
A second opinion is pointless.
For a serious diagnosis, a second opinion from a motor neuron disease specialist may be useful.
ALS always affects thinking.
Many people retain normal cognition; some may have cognitive or behavioral changes.
Only medication matters.
Daily care, breathing, nutrition, rehabilitation and psychological support are also important.