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Tips for Getting a Diagnosis of an Autoimmune Disease

Getting an accurate autoimmune diagnosis can prove to be challenging. Learn more about how to get the right diagnosis.

1

Know your family’s medical history

Given the family connection, knowing the health histories of other family members is critical. For example, if your grandmother, father, sister, or uncle has an autoimmune disease, you could be more susceptible to developing one yourself. Take inventory of your family’s health issues, expanding your research beyond your immediate family to include grandparents, aunts, uncles, cousins, and other extended relatives. Once you know your family history, share it with other family members and your doctor who can then assess the possibilities with a degree of accuracy and order appropriate tests.

2

Keep a list of symptoms

People with autoimmune diseases often suffer from a number of symptoms that, on the surface, seem unrelated. In addition, they may have suffered from other seemingly unrelated symptoms throughout their lives. It is important to make a list of every major symptom you’ve experienced so that you can present it clearly to your doctor. List the symptoms in the order of concern to you.

3

Seek referrals

Talk to your family and friends. If you’re having trouble getting a proper diagnosis, see whether someone you know and trust can recommend an internist in your community who is also a good diagnostician – it’s always good to ask around. Check your community resources—attend health agency meetings and community health meetings sponsored by local hospitals, and talk with the health care professionals at those meetings and elsewhere. Because there is no medical specialty called “autoimmunology,” it can be difficult to determine the type of doctor you may need to see. One thought is to identify the medical specialist that deals with your major symptom and then check with a major medical center for a referral to that specialty department. A number of agencies dealing specifically with autoimmune diseases maintain referral lists.

4

 Obtain a thorough clinical examination

Tests vary for different autoimmune diseases, and a diagnosis is usually reached through careful analysis of laboratory test results combined with a patient examination and history. When facing test situations, a patient might ask: What is the purpose of this test? Are there any alternatives? Is this an outpatient or inpatient procedure? Can I anticipate any pain, discomfort, or claustrophobia; and if so, can I take medication to make me more comfortable? How much does the procedure cost, and is it covered by my health insurance? Can I get a copy of the test results? What will they tell me about my condition? (You will need a copy of lab test results to give to other doctors if you are going to seek a second opinion.) The patient needs to understand that, although diagnostic criteria define a disease, they are sometimes uncertain.

5

Seek multiple opinions

Sort out your options for treatment at the beginning before symptoms worsen, but check first to see whether your insurance will pay for a consultation. Since autoimmunity has just begun to be recognized as the underlying cause of some 100 known autoimmune diseases and because symptoms can be vague and not visibly apparent, many doctors don’t think to test for autoimmune diseases initially. If a doctor doesn’t take your symptoms seriously, dismisses them as stress-related (when you do not feel as though you are under any excess stress), or refers you to a psychologist, find another doctor. You know you’re not feeling well–don’t be intimidated. When trying to get a correct diagnosis, it’s important to be assertive.

6

Partner with your physician

Once you have settled on your treatment plan, keep in mind that your health is best managed through a partnership—you and your medical team. If more than one medical specialist is treating you, select one of those physicians to be your “main” provider to manage your medications. This physician needs to agree to take the lead role. Establish a dialogue, a give-and-take on a mutual respect basis. Don’t be afraid to ask questions:

  • What are the treatment options?
  • What are the advantages and disadvantages of each?
  • How long will the treatment last?

7

Develop a plan to manage long-term effects

The complicated process of obtaining a diagnosis and developing an appropriate plan of treatment may mean that you will be subjected to a great deal of uncertainty. Accept that patients with autoimmune disease and their families very likely will need to adapt to a somewhat different lifestyle. Sharing your situation with others can have enormous benefit, including eliciting the kind of emotional support that is so necessary for people with undiagnosed autoimmune diseases. Consider support groups to connect with others who understand your challenges, celebrate your victories, and can help you navigate your autoimmune journey.

8

Recognize getting a diagnosis may be a challenging journey

For people living with autoimmune diseases, getting a proper diagnosis can be one of the most difficult challenges they face. Autoimmune Association conducted a survey of autoimmune disease patients and found that the majority of those eventually diagnosed with serious autoimmune diseases had significant problems in getting a correct diagnosis. Many were incorrectly diagnosed with a variety of conditions that have no specific blood test to confirm the diagnosis. Many were told that their symptoms were “in their heads” or that they were under too much stress. Furthermore, the survey revealed that 45 percent of autoimmune disease patients had been labeled as chronic complainers or were told that they were overly concerned with their health in the earliest stages of their illnesses. On average, autoimmune patients see four different doctors over a four-year period before a diagnosis is made. Since many autoimmune diseases have confusing and unrelated symptoms, Autoimmune Association urges patients to follow the preceding steps to arrive quickly at an accurate diagnosis.

Find the right doctor

A trusted doctor who understands and listens is one of your best tools to help you live your life to the fullest. Begin your search for your partner physician today.

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