An interview with Rup Tandan, M.D., F.R.C.P., Professor and Vice Chairman of Clinical Affairs and Medical Director of The ALS Association Certified Center of Excellence in the Department of Neurological Sciences 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, and ALS look-alike and ALS-mimic conditions are considered and excluded.
How often the first diagnosis of ALS wrong and the problem turns out to be something else?
In up to 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. This type of a diagnostic error is called a false-negative error of diagnosis.
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 to produce a diagnostic delay, it can take nine to twelve 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 and slowing of the course of the disease. Research indicates that the drug is most beneficial if started early in the disease.