The pathway to a medical diagnosis
What you need to know to prepare for a conversation with your doctor, understand the diagnostic process, and manage your expectations.
Step 1: Seek answers
Everyone has aches and pains now and then. Most of us know what it’s like to feel extra-tired sometimes, too. These kinds of symptoms are usually due to an injury, or are caused by the flu virus or another temporary illness. But if you’ve had joint pain and extreme fatigue for more than a few weeks, or you’ve noticed unusual hair loss or a face rash—and especially if you have any risk factors for an autoimmune disease—it’s time to stop waiting.
It’s time to take the first step: to have a conversation with your doctor about the changes you’ve been experiencing, how your health is being affected, and whether these signs and symptoms could be due to the autoimmune disease lupus, or some other illness or condition.
Step 2: Learn how lupus is diagnosed
In order to give you answers about what your symptoms or risk factors may mean, your doctor will likely:
- Review the signs/symptoms that caused your concern(s)
- Review your medical history, including any medications you may be taking
- Review your family medical history for any close relatives with lupus or another autoimmune condition
- Conduct a physical examination
- Order, then review laboratory test results, when tests are indicated, and imaging studies (X-ray; MRI), when appropriate
- Consider a biopsy of skin or other body tissue for microscopic examination, if indicated
This information will allow the doctor to begin to rule out medical problems that don’t fit your health picture.
However, diagnosing lupus isn’t easy. This is because:
- Signs/symptoms can appear and disappear
- Signs/symptoms can be different for each person
- Signs/symptoms can be like those found in other illnesses
- Your doctor may not be familiar with lupus
So, while the information from your medical history and physical exam and lab tests may suggest lupus or another condition or disease, there can still be uncertainty. This is why your doctor will probably not be able to tell you, at your first visit, whether or not you have lupus.
Diagnosing a complex disease such as lupus will often take several months, and two or three doctor appointments, as you continue to track your symptoms, and your doctor continues to monitor your lab test results and your overall health.
If your doctor believes your signs and symptoms point to the possibility of lupus, he/she may recommend a referral to a specialist doctor who has training in the group of autoimmune diseases that includes lupus. This specialist is called a rheumatologist (ROOM-ah-TOHL-ah-JYST).
Step 3: Prepare for your first appointment
Because lupus is not a simple disease to recognize, it’s a good idea to start by seeing a general medicine doctor—also known as Primary Care Provider, General Practitioner, or Family Physician.
There are several kinds of health care providers who work in the office of a primary care doctor. You may see a medical doctor (MD), a physician assistant (PA), or a nurse practitioner (NP). By asking you questions and listening to your answers, your provider will build a picture of your medical condition and immediate concerns. The clearer the picture, the sooner the provider will be able to give you an accurate diagnosis, or refer you to a specialist physician.
No matter which provider you see, it’s helpful to remember that today’s health care system works best when you look at your care as a team effort. You’re also taking on a responsibility, because in any meeting between yourself and a provider, you are the team leader. And as the leader, you can make the job easier for other members of the team.
Here are seven ways you can help your health care providers better understand your health and your health care needs, and make decisions about a diagnosis.
- Have a written summary of your medical history. You don’t have to list every cold or minor injury you’ve ever had—it’s the highlights of your history that the doctor wants to know. Include surgeries, hospitalizations, outpatient procedures, and vaccinations. Give dates, even if they’re just approximate.
- Bring copies of your medical records. By knowing your treatment history, lab test results, imaging studies, and any previous diagnoses, your doctor will better understand your medical history. Note: To obtain copies of your medical records you’ll have to complete a form, and possibly pay a fee, so contact those doctors’ offices well in advance of your appointment.
- Know the names and dosages of all medications you’re taking. This includes vitamins, minerals, and herbal supplements. Bring them in their regular containers if you can, in case the doctor needs to see them. A list that you can keep updated could also be stored on a flash drive that you take to your appointment, or typed on a sheet of paper.
- Be prepared to give as much detailed information as you can about your symptoms, both recent and in the past. For example, this statement, "For the past two months I’ve noticed a lot more hair in my hairbrush, and I feel like I don’t get any rest at all even though I sleep ten hours every night” gives more information than saying, “I think I’ve been losing my hair and I’m so tired all the time.” This checklist developed by the American College of Rheumatology lists symptoms that are often seen with lupus. By completing it, you'll learn a lot about symptoms that occur with lupus. You can also print it out and give it to your doctor.
If you’re having pain, be prepared to answer questions like these:
- Is this a new symptom or has it happened before?
- Is it present every day, or do you have pain-free days?
- Does anything trigger it, make it better, or make it worse?
- When did it start?
- Where is the pain most severe?
- Have with you any specific questions that you’d like answered. For example, you might want to know if it’s OK for you to get pregnant before you know what your diagnosis is. Or, you might need a note to explain absences from work or to describe why certain accommodations at your workplace will make your job easier. If you’re already taking a medicine, you could ask whether it might be causing any of your symptoms. If you’ve had lab tests recently, you might want to ask if any of the results help explain how you’ve been feeling. It will help if you write down your questions. That way, if the doctor can’t answer them all at your appointment, you can leave the list and ask for the answers to be sent to you.
- Bring a relative or friend to the appointment, if you can. Make sure it’s someone who’s familiar with your health history, and that you both agree on the details you’ll be giving the doctor. Ask that person to take notes while you concentrate on listening. If you’re alone, be prepared to take notes, or bring an audio recorder (many smartphones today have a built-in recorder; make sure to let your doctor know you’re using it).
- Keep a daily health journal. Online you can find various resources to help you keep a daily record of how you’re feeling, both physically and mentally. Also, smartphone apps are available to help you do this, or you can simply write in a notebook. A daily journal will allow you to keep track of your physical activities and medication side effects, as well as any symptoms that have occurred or gone away. Include details on when a symptom started, what may have triggered it, any steps you took to try to feel better, and whether that step worked. Results of doctor appointments and lab tests will also go into your journal.
You’ll find that having this all at your fingertips will make every appointment much more productive.
Step 4: Follow up
It can be very hard to take in everything that’s said at a doctor's appointment. Before the doctor leaves the room, ask for a brief summary of his/her assessment of your condition, and the action plan to address it, including follow-up. You can also request a printed summary to be mailed to you, including any instructions.
Your action plan may include some or all of these steps:
- Lab test orders and when you should have the tests done
- How to reduce the impact of symptoms that are bothering you, including any lifestyle activities or changes that may help
- Prescriptions for medications that may help
- The approximate date when your doctor would like to see you again (arrange this appointment before you leave the office)
It's not easy, but it's worth it!
It’s not easy to face the unknown. You may need all of your patience and courage while waiting for your doctor to share with you the results of his/her investigations. Stay busy with things you enjoy, get plenty of rest, and try not to worry. By seeking answers that explain sudden or long-term changes in your health you’ve taken a very important step along your journey to improved quality of life. It’s a journey that affects everyone who cares about you and depends upon you!
And remember: whether you have lupus or another disease or condition, resources and help are available at resources.lupus.org .