For people with autoimmune diseases, getting a proper diagnosis can be one of the most difficult challenges they face. The American Autoimmune Related Diseases Association (AARDA) 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. Further, the survey revealed that 45 percent of autoimmune disease patients had been labeled hypochondriacs in the earliest stages of their illnesses.

     To help people having confusing, undiagnosed symptoms to obtain a correct diagnosis, AARDA urges them to take these steps:

1. Do your own family medical history. Take an inventory of your family health problems, expanding your research beyond your immediate family to cousins, aunts, uncles, and other relatives. Since current research points to a genetic component in most autoimmune diseases, you should know the health histories of your first degree relatives, including grandparents and cousins, if possible. Once you know your family history, you can communicate it effectively to your doctor who can then assess the possibilities with a degree of accuracy and order appropriate tests.

2. Keep a "Symptoms" list. 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 important, therefore, to make a list of every major symptom youve experienced so that you can present it clearly to your doctor. List the symptoms in the order of concern to you. When the nurse calls you into the exam room, review your list--or, better yet (in most cases), give the list to the nurse to record in your chart. When you see your doctor, be sure to mention at the very start of your visit the symptom that bothers you the most. This is often the problem to which your doctor will pay the most attention. Unless your problem list is lengthy, or the doctor notes a serious problem which takes higher priority, she/he usually will be able to answer all your questions. Know in advance what questions are truly important to you. In this way, you will not spend a lot of time discussing things that confuse the issue of your current needs.

3. Seek referrals to good physicians. Talk to your family and friends. If you are 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 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 of "autoimmunologist," 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. Inquire about the physician and hospital experience with autoimmune disease. All patients want to receive the highest quality treatment, but it is difficult to evaluate physicians and hospitals to whom they entrust their care. It a good idea to ask the physician whether he or she takes care of patients with the specific disease that has been diagnosed. Generally speaking, the larger number of patients with a particular autoimmune disease treated by the physician, the better. Also, a specialist should be adept at managing the therapies used to treat a particular autoimmune disease.

5. Obtain a thorough clinical examination. Tests vary for different autoimmune diseases, and no single test can ascertain whether a patient has an autoimmune disease. 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? Who will get the test results, and what will they tell me about my condition? The patient needs to understand that, although diagnostic criteria define a disease, they are sometimes uncertain. Making an autoimmune diagnosis is an exercise in the art of medicine as well as the science.

6. Get a second, third, fourth opinion if necessary. 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 dont think to test for autoimmune diseases initially. If a doctor doesnt 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 youre not feeling well, so dont be intimidated. When trying to get a correct diagnosis, it important to be assertive.

7. Partner with your physicians to manage your disease. Once your have settled on your treatment plan, keep in mind that your health is best managed through a partnership--you and your medical team. Dont be afraid to ask questions: What are the treatment options? What are the advantages and disadvantages of each? How long will the treatment last? Establish a dialogue, a give-and-take on a mutual respect basis.

5. Learn to deal early on with the long-term effect of autoimmune disease. 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 life style. Some people are using the Internet as a way to communicate their symptoms with others. Doing so can help advance your own personal research, may provide clues to what disease you are experiencing, and can be a means of uncovering good resources for finding a good diagnostician. 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. If you dont have your own computer, many libraries provide access to the Internet through their computers. Ask your librarian whether this is available to you, and dont hesitate to ask for help if getting "on-line" isnt clear to you. Also, contact your hospital community education department, a nurse at the health department, or a nonprofit disease-specific organization to find out about support groups.