How to Go About Getting a Second Opinion

First, let your current physician know you'd like a second opinion. Since this is becoming a common occurrence in the U.S. and most doctors truly have your health as their primary concern, you can likely expect your doctor to be open to this idea. However, it's normal to feel a certain amount of reluctance to bring up the question of a second opinion to your doctor. Most Americans have confidence in their health care provider and don't want to risk offending their physician or jeopardizing the relationship they have established. 

Say something like, 'You know, this is a complicated and important (issue) for me, and I think I'd like to talk to another physician about my (diagnosis) as well. Perhaps you have a recommendation?' That helps preserve the bond', says Peter Clarke, professor of preventative medicine at USC and co-author of "Surviving Modern Medicine." 2

Next, find a doctor for your second opinion. Since even some neurologists haven't taken care of a patient with ALS, is important to consider seeing a sub specialist - a neurologist specializing in neuromuscular diseases like ALS. In the approximately 60 ALS clinics across the country, there are physicians knowledgeable and experienced in making the diagnosis of ALS. Your current doctor may be able to recommend someone. Included on The ALS Association's web site are lists of certified ALS Association CentersSM and ALS clinics working with ALS Association chapters. In the tri-state Pennsylvania area, there are two ALS Association-Certified Centers you could ask about:

The Jefferson Weinberg ALS Center at Thomas Jefferson University Hospital in Philadelphia, PA -

The ALS Association Center at Hershey Medical Center, Hershey, PA (Medical Director: Zachary Simmons, MD). or to make an appointment, please call (800) 292-3332 or (717) 531-4191. All other contacts: please call (717) 652-2800 or e-mail Clinic Nurse Coordinator Susan Walsh, RN, MSN will assist you.


Affiliate Treatment Centers for ALS

The Chapter also provides support for two additional clinics in our service region. Both offer specialized ALS care for patients in northeast and northern Pennsylvania.

The ALS Clinic at Lehigh Valley Hospital (Medical Director: Glenn Mackin, MD) Call (610) 402-CARE

The ALS Clinic at Geisinger Bloomsburg Hospital, Bloomsburg, PA (Medical Director: Scott M. Friedenberg, MD). or call 570.387.2420 ext 2842.

The ALS Clinic at Geisinger Wyoming Valley, Wilkes Barre, PA (Medical Director: Neil Holland, MD) or call 570-808-5635

Other places to get information include your local ALS Association chapter or support group. The ALS Association's national toll-free information and referral service (800) 782-4747 or the many reliable medical Internet web sites. Other sources of information are local hospitals, state medical and neurological associations and the American Academy of Neurology. An advantage of consulting a doctor who treats a number of ALS patients is that he or she is likely to be informed about the latest treatments and current research and can offer a supportive, hopeful perspective.


Who pays for a second opinion?

Before making a final selection on whom to see for your second opinion, review your health insurance policy or contact your health insurance company to find out if the cost of a second opinion is covered under your policy. Also check to learn if there are any restrictions as to which physician can provide a second opinion. Often managed care companies will require that patients to get their second opinion from a doctor who participates in the same managed care plan. The policies on coverage for second opinions vary from state to state and company to company. Some states are considering legislation that would require health care plans to pay for a second doctor's opinion if the patient or primary doctor requests one. Second opinion physician consultations can cost $150 or more if patients have to pay for the visit themselves. In dealing with health insurance companies, remember that patients have the right to appeal insurance decisions. For more information about appeals in managed health care companies, contact the state Department of Corporations.


What to expect at your second opinion appointment

  • Let the doctor's office know you are requesting a second opinion for an ALS diagnosis. Many doctors will schedule an appointment for ALS consultation more quickly than routine appointments.
  • Often the consulting physician will be able to use the results of test you have already had thus saving money, time and the process of repeating multiple tests. Be sure your complete medical record, results of tests, and actual MRI, CT, or X-ray films and electromyography (EMG) recordings get to the doctor's office before your appointment - or bring them with you. By having the actual results rather than the report of the test, the consulting physician can provide his or her own interpretation of the test results.
  • It's a good idea to have a relative or friend come with you for support and to take notes on, or tape record, what the doctor says and recommends. Realize that a second opinion appointment can be a stressful time and be sure to write out your questions in advance.
  • Since you will likely be seeing an ALS expert, take advantage of the opportunity to ask questions about prognosis (what your future holds), research, treatment, availability of drug trials and, most importantly, how to manage ALS symptoms and maintain your physical function for as long as possible.
  • Verify that the consultant will provide a full report to your current doctor and will be available to you for follow up questions. "'Education is empowerment,' says Cedars-Sinai's Beth Karlan, director of gynecologic oncology. 'It's a sound bite, but it's true. It's really important that you view yourself as a consumer of the most important thing in the world - your own life.'"

2  Mestel, Rosie (1999, February 15). Need a Second Opinion? Los Angeles Times, Home Edition: Health Section, Page S-1.


The ALS Association Greater Philadelphia Chapter
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