An interview with Rup Tandan, M.D., F.R.C.P.,
Professor, Vice Chairman and Medical Director of The ALS Association Certified CenterSM of Excellence at the University of Vermont, Burlington
Is a second opinion worth the trouble?
Yes. If a patient wants a second opinion, he or she should get it. I actually recommend getting a second opinion because the diagnosis of ALS is so life changing. The only way a person can begin to accept such a diagnosis is to be certain that the diagnosis is correct.
How often is the first diagnosis of ALS wrong and the problem turns out to be something else?
In about 10 to 15% of the cases, patients get what we call a false positive. That means they are told they have ALS, but, in the end, another disease or condition is discovered to be the real problem.
Are some patients told they don’t have ALS and then it turns out that they do?
Yes, up to 40% of patients are initially told they have another disease, and then it turns out they have ALS. Many conditions can mimic ALS.
What typically causes a delay in getting the right diagnosis and what is the impact of getting a delayed diagnosis of ALS?
An international study that surveyed physicians in the United States, Europe and Latin America showed that a delay in diagnosis typically occurs at three key times:
Depending on which of these factors combine, it can take nine to 12 months before a diagnosis of ALS is made.
There is an FDA-approved drug, Rilutek,® which has been shown to produce a modest increase in survival. Research indicates that the drug is most beneficial if started early in the course of the disease.
How to go about getting a second opinion
First, let your current physician know you'd like a second opinion. Most doctors truly have your health as their primary concern, so 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.
One tip from a Los Angeles Times article1 suggests, "… 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."
Next, find a doctor for your second opinion. Since 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 many ALS clinics across the country, there are physicians knowledgeable and experienced in making the diagnosis of ALS. Included on The ALS Association's web site are lists of certified ALS Association CentersSM and ALS clinics working with ALS Association chapters. 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. 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. You can also contact Medicare for specific state rules: 1-800-MEDICARE (1-800-633-4227) or visit http://www.medicare.gov/coverage/home.asp.
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.
1 "Need a Second Opinion?" by Rosie Mestel. Los Angeles Times. February 15, 1999, Home Edition: Health Section, Page S-1