If you’ve recently been diagnosed with ALS, you may wonder if you should get a second opinion.
The answer, according to most experts, is “yes.” A second opinion can be valuable for almost any medical diagnosis, but it is especially important when dealing with ALS.
The biggest reason for getting a second opinion is to confirm whether you actually have the disease. ALS is a particularly difficult disease to diagnose, which sometimes causes it to be misdiagnosed. 10% to 15% of initial ALS diagnoses end up being false positives, meaning the patient is told that they have the disease when they actually do not. So if you’ve received an initial ALS diagnosis, there’s still roughly a one in seven chance that you don’t have ALS. A second opinion takes away most of that uncertainty.
If you have been misdiagnosed, it’s important to discover that fact so that you can find out what is really causing your symptoms. A second opinion allows you to get a correct diagnosis and begin the treatment you need for that disease.
Even when a second opinion confirms that you do have ALS, discussing it with another doctor can still be helpful and worthwhile. It allows you to get another expert’s perspective, and perhaps learn about different treatment options and the latest research into the disease.
How to Get a Second Opinion
The first step in getting a second opinion is to tell your current doctor. Some patients are reluctant to say that they’d like to get a second opinion, fearing that it might hurt the physician’s feelings or suggest that they don’t trust the doctor’s diagnosis. However, for a disease as serious and life-changing as ALS, doctors should expect their patients to get second opinions. Simply tell your doctor that you want to be absolutely sure and get all the information you can about ALS before making any decisions, and ask if they’d recommend someone who can give you a second opinion.
When deciding where to go for a second opinion, choose a doctor who has experience in treating ALS patients. Since ALS is relatively rare, many doctors have never dealt with the disease. Someone who works with ALS patients all the time is more likely to be up-to-date on the latest information about the disease, and should be better able to answer any questions you may have. You can find doctors who specialize in ALS at any of the ALS Association Certified Treatment Centers and Clinics throughout Texas.
When setting up your appointment, let the scheduler know that you are looking to get a second opinion for an ALS diagnosis. Some doctors will give priority to any patient seeking an ALS second opinion, allowing you to get in for an appointment more quickly.
Make sure the new doctor has access to your medical records, including the test results that led to your initial ALS diagnosis. Having the test results can avoid the need for retaking expensive tests. Also, by having the raw test results (rather than the report of the tests), the doctor can make their own decision about what the results mean.
Ask plenty of questions, and take plenty of notes (or even record audio of the conversation so that you can refer to it later). You may want to write down your questions ahead of time, to make sure you remember to ask them. It’s also a good idea to have a family member or close friend accompany you to the appointment. Besides providing emotional support, they can focus on taking notes and make sure you don’t miss any important details.
For extended family and friends, you might want to wait until after a second opinion confirms your diagnosis before telling them you have ALS. You can learn more about sharing your diagnosis here.