By Laura Heuer
Answers by Sharon Gacki of The ALS Association, St. Louis Regional Chapter
How long it usually takes to get a diagnosis of ALS?
ALS is often a difficult disease to diagnosis and can take some time. There is no one test for identifying ALS. The diagnosis is made by ruling out many other possibilities and by observing the continuing loss of muscle over a period of months. Most patients are diagnosed by a neurologist and have undergone an EMG, a nerve conduction test, and a muscle biopsy for confirmation.
Are there any tell tale signs of ALS?
Because the disease is difficult to diagnosis and symptoms mimic other diseases, there are not many tell-tale signs of ALS. Typical symptoms may include: fatigue, respiratory concerns, muscle weakness or stiffness, muscle spasms, poor fine-motor coordination, swallowing difficulties, tongue weakness, speaking difficulties, and/or mobility difficulties.
What are some steps you can take to help the process along if there are any in getting an accurate diagnosis?
The diagnosis of ALS is usually done by a neurologist through a careful examination of the medical history, a neurological examination, and the routine tests used to establish a diagnosis of ALS. By getting to a neurologist as early as possible and having the medical history in place, a person can help with the diagnosis process.
What are some of the best tips you feel will help a patient once they have been diagnosed?
Once a patient is diagnosed, he or she should contact their local ALS Association. The St. Louis Regional Chapter offers a comprehensive network of in-home services, at no cost, to patient and family members. Additionally, a strong alliance exists with other not-for-profit organizations that are familiar with ALS. Lastly, a community partnership program with multiple local service providers offers specialized medical services to patients and families. Through these collective efforts, the chapter has created a solid continuum of care for ALS patients in Eastern Missouri as well as Central and Southern Illinois.
How do you feel is the best way to get your family and friends to understand your diagnosis?
Most ALS patients appreciate when their family and friends take the time and opportunities to
learn about ALS either though written material supplied by local ALS Associations or by using reputable Web sites. In addition, family and friends should not be afraid to ask the patient questions about what is happening to them as well as letting the patient discuss their feelings about the disease and its progression. Patients will tell the person if they are uneasy about discussing their diagnosis and symptoms.
For more information
For more information about ALS, please visit www.alsa-stl.org.
Go to www.jakoter.com for organizing your health journeys and for expert medical advocacy and consulting.