Essential Questions to Ask Your Doctor About ALS
When diagnosed with ALS, it is crucial to ask your doctor specific questions about dysphagia screening, nutritional management, and respiratory support options, as these interventions directly impact survival and quality of life. 1
Diagnosis and Disease Progression Questions
- What type of ALS do I have (bulbar onset or spinal onset)? This affects symptom progression patterns.
- What tests confirm my ALS diagnosis? (MRI is usually appropriate for initial imaging 1)
- What is my current functional status on the ALS Functional Rating Scale-Revised (ALSFRS-R)?
- What is my expected disease progression timeline?
- How often should I have follow-up appointments? (Guidelines recommend nutritional and dysphagia evaluations every 3 months 1)
Nutritional Management Questions
- How will you monitor my nutritional status? (BMI and weight loss should be assessed every 3 months 1)
- When should I consider a feeding tube placement?
- What are the benefits and risks of percutaneous endoscopic gastrostomy (PEG)?
- Should I aim for weight stabilization or weight gain? (Weight gain is recommended for patients with BMI <25 kg/m², while weight stabilization is recommended for those with BMI between 25-35 kg/m² 1)
- What dietary modifications should I make as swallowing becomes difficult?
Respiratory Support Questions
- How and how often will my respiratory function be monitored?
- What are the signs of respiratory insufficiency I should watch for?
- When should I consider non-invasive ventilation?
- What are the benefits and risks of invasive ventilation?
- How do ventilation options affect my quality of life and survival?
Medication and Treatment Questions
- What medications are available to slow ALS progression? (Riluzole is FDA-approved for ALS treatment 2)
- What is the expected benefit of riluzole? (Extends survival by approximately 60-90 days 2)
- What side effects should I watch for with riluzole? (Liver injury, neutropenia, and interstitial lung disease 2)
- How often should my liver function be monitored while on riluzole? (Before and during treatment 2)
- What clinical trials might I be eligible for?
Symptom Management Questions
- What treatments are available for muscle cramps, spasticity, and fasciculations?
- How will my pain be managed as the disease progresses?
- What options exist for managing excessive saliva or thick secretions?
- How can I maintain mobility for as long as possible?
- What exercise regimen is appropriate for me? (Proper exercise is important for preventing disuse atrophy 3)
Support and Quality of Life Questions
- What multidisciplinary services are available (physical therapy, occupational therapy, speech therapy)?
- When should I see a palliative care specialist?
- What assistive devices should I consider now and in the future?
- How can I maintain communication ability as speech becomes difficult?
- What support groups or counseling services are available?
End-of-Life Planning Questions
- When should we discuss advance directives? (These discussions should occur early, ideally when first diagnosed 1)
- What palliative care options are available as the disease progresses?
- What can I expect in the terminal phase of ALS?
- How can we prevent respiratory distress at the end of life?
- What hospice services are available and when should I consider them?
Caregiver Support Questions
- What resources are available to help my caregivers?
- How can we prepare for increasing care needs?
- What training do my caregivers need?
- How can we prevent caregiver burnout?
- Are there respite care options available?
Common Pitfalls to Avoid
- Delayed discussions about feeding tubes: Waiting too long can lead to emergency placement when nutritional status is already poor
- Overlooking cognitive changes: Up to 50% of ALS patients have some cognitive or behavioral changes that may affect treatment decisions 1
- Delaying end-of-life discussions: These should occur when symptoms of dyspnea appear to prevent unwarranted fears 4
- Focusing only on physical symptoms: Psychological support is equally important
- Not asking about clinical trials: New treatments are constantly being researched
Remember that the diagnostic delay in ALS averages 17 months 5, so being proactive with these questions can help ensure you receive appropriate care as early as possible.