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Preparing for your appointment
By Mayo Clinic staffIf you're having some of the early signs and symptoms of a neuromuscular disease such as ALS, you might first consult your family doctor, who will listen to your description of symptoms and do an initial physical examination. Then your doctor will probably refer you to a neurologist for further evaluation.
What you can do
Once you're under the care of a neurologist, it may still take time to establish the diagnosis. In fact, most studies have shown that on average, it takes up to a year to get a formal diagnosis of ALS. If you've been referred to an academic medical center, your evaluation may involve a team of neurologists and other doctors specializing in different aspects of motor neuron disease.
Although a thorough workup usually means you're getting top-notch care, the process can be stressful and frustrating unless your medical team keeps you informed. These strategies may give you a greater sense of control.
- Keep a symptom diary. Before you see a neurologist, start using a calendar or notebook to jot down the time and circumstances each time you notice problems with walking, hand coordination, speech, swallowing or involuntary muscle movements. Your observations may reveal a pattern pointing to a specific diagnosis.
- Find one 'go-to' neurologist or neurology nurse specialist. If you see more than one doctor and visit more than one department, you need a coordinator who's familiar with your overall situation, willing to answer your questions and prepared to make your concerns known to the other people involved in your care. Your family doctor or the neurologist who orders your tests and subspecialty consultations may be the best candidate, but in some institutions, care coordination is the responsibility of a nurse, social worker or case manager.
What to expect from your doctor
Your family doctor will carefully review your family's medical history and your signs and symptoms. Your neurologist and your family doctor may both check your neurological health by testing:
- Reflexes
- Muscle strength
- Muscle tone
- Senses of touch and sight
- Coordination
- Balance
- Amyotrophic lateral sclerosis fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm. Accessed Sept. 28, 2010.
- Elman LB, et al. Clinical features of amyotrophic lateral sclerosis. http://www.uptodate.com/home/index.html. Accessed Sept. 28, 2010.
- Maragakis NJ, et al. Epidemiology and pathogenesis of amyotrophic lateral sclerosis. http://www.uptodate.com/home/index.html. Accessed Sept. 28, 2010.
- McCluskey L. Familial amyotrophic lateral sclerosis. http://www.uptodate.com/home/index.html. Accessed Sept. 28, 2010.
- Neurological diagnostic tests and procedures. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/misc/diagnostic_tests.htm. Accessed Sept. 28, 2010.
- ALS in the military: Unexpected consequences of military service. ALS Association. http://www.alsa.org/files/pdf/als_military_paper.pdf. Accessed Sept. 28, 2010.
- Elman LB, et al. Diagnosis of amyotrophic lateral sclerosis. http://www.uptodate.com/home/index.html. Accessed Sept. 28, 2010.
- Galvez-Jimenez N, et al. Symptom-based management of amyotrophic lateral sclerosis. http://www.uptodate.com/home/index.html. Accessed Sept. 28, 2010.
- Choudry RB, et al. Pharmacologic treatment of amyotrophic lateral sclerosis. http://www.uptodate.com/home/index.html. Sept. 28, 2010.
- Why is exercise important? In: Everyday Life With ALS: A Practical Guide. Muscular Dystrophy Association. http://www.als-mda.org/publications/everydaylifeals/ch8/. Accessed Sept. 28, 2010.
- Miller RG, et al. Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009;73:1227.
- Miller RG, et al. Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009;73:1227.
- Covering all the bases. ALS Association. http://www.alsa.org/coveringallthebases/. Accessed Oct. 21, 2010.
- Armon C. Smoking may be considered an established risk factor for sporadic ALS. Neurology. 2009;73:1693.
- Gallo V, et al. Smoking and risk for amyotrophic lateral sclerosis: Analysis of the EPIC cohort. Annals of Neurology. 2009;65:378.
- Mayadev AS, et al. The amyotrophic lateral sclerosis center: A model of multidisciplinary management. Physical Medicine and Rehabilitation Clinics of North America. 2008;19:619.
- Crum BA (expert opinion). Mayo Clinic, Rochester, Minn. Oct. 6, 2010.
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