Is it necessary for my primary care physician or neurologist to have experience with ALS?

This is not to be expected and is not strictly necessary. ALS is a rare disease, so general practitioners and local neurologists cannot be expected to specialize in ALS treatment. Despite the relative rarity of ALS, the typical complaints, symptoms, and treatment methods are also present in other conditions (mobility and communication difficulties, swallowing difficulties, speech difficulties, labored breathing, pain), so that general practitioners and “general” neurologists can also assist with treatment.

Optimal care is achieved when specialists at ALS centers collaborate with general practitioners and neurologists whose offices are located close to patients’ homes. In this setting, general practitioners—even without specialized knowledge of ALS—can play an important role in ALS care.