Should you seek a second opinion for CIDP?

A second opinion is when a person consults with a healthcare provider other than the one they are currently working with. The healthcare provider supplying a second opinion will review test results and medical records and give an opinion on the diagnosis, treatment recommendations, and next steps. They may also perform exams or order diagnostic tests.

Many people who are diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP) find that getting a second opinion is helpful. CIDP is a neurological disorder that causes inflammation and damage to the peripheral nervous system (the nerves outside the brain and spinal cord).

Treatment for CIDP is typically overseen by a neurologist, a medical doctor who specializes in treating conditions that affect the nervous system. CIDP is an autoimmune disease, and the main treatments are therapies that suppress or modulate the immune system to halt inflammation.

Reasons to seek a second opinion

Receiving a diagnosis of CIDP may be reason enough to seek a second opinion. Research has estimated that more than half of people diagnosed with CIDP have been misdiagnosed. This includes people who do not have CIDP receiving a diagnosis of CIDP, and people who have CIDP being diagnosed with a different condition that shares symptoms with CIDP.

This is not to say that you should be distrustful of your healthcare providers, but it does illustrate that CIDP is a complex disorder. A second opinion can provide you with more information that can help you feel more confident in the diagnosis and more confident when making treatment decisions.

Reasons to seek a second opinion include:

• You have an atypical variant of CIDP. There are multiple variants of CIDP, some more common than others, and different variants can cause different symptoms and patterns of symptoms.
• Your healthcare providers are uncertain or have unanswered questions about your diagnosis.
• You do not fully understand the diagnosis, or you want a different explanation of your diagnosis.
• You have a difficult time communicating with the healthcare providers you are currently working with.
• CIDP is not responding to treatment.
• You have experienced a relapse after your initial treatment for CIDP.
• You do not feel that your concerns about your health are being taken seriously. For example, concerns about treatment side effects.
• Your friends and loved ones think that a second opinion is a good idea.
• People you have talked to at support groups for CIDP or neurological conditions recommend getting a second opinion.

Steps to seeking a second opinion

If you or a loved one is living with CIDP and are considering a second opinion, here are some steps to help you get started:

• A good place to begin is by talking to your current healthcare providers, telling them that you would like to seek a second opinion, explaining your reasons why, and asking if they can recommend someone to provide a second opinion.
• Know that second opinions are common, and your current healthcare team should understand the value in having more information about the diagnosis.
• Contact your insurance provider and find out if second opinions are covered by your insurance policy. Find out if you need any preauthorization and what out-of-pocket expenses you will be responsible for.
• You can also use your insurance provider’s website to look for in-network specialists who can provide a second opinion.
• Patient advocacy groups, local medical centers, support groups, and recommendations from people you know can also help you find a second healthcare provider.
• You will want a provider who is familiar with CIDP and other disorders that affect the nervous system. Because CIDP is not a common condition, you may need to contact healthcare providers to find out if they have experience treating the condition.
• Organize your medical records. You’ll want to have copies of any and all documents related to your diagnosis, including test results, notes about your diagnosis, and information about medications you take. Your current healthcare providers can help supply these records.
• Prepare a list of questions you have for the healthcare provider who is supplying the second opinion.