You’ve started getting pain in a couple of joints and some of them are swelling. You also feel stiff when you wake up in the morning and sometimes you have a fever. Searching the Internet for answers leads you to information about rheumatoid arthritis (RA). It sounds very much like your symptoms. How do you get an official diagnosis?
Getting a referral to a rheumatologist
The first step in your journey towards a potential diagnosis of RA is to make an appointment with your family doctor for some initial tests. When you explain your symptoms to them, they will order a range of blood tests. These will include inflammation markers, rheumatoid factor (RF), ANA, and others. Based on the symptoms, your blood tests may indicate that it’s possible you have some kind of inflammatory arthritis and your doctor will give you a referral to a rheumatologist.
Should your RF blood test come back negative, your PCP may say that this means you don’t have RA. This is not necessarily the case — in fact, up to 30 percent of people who have RA have a negative rheumatoid factor. It’s called being seronegative.
Many family doctors are not aware of this information about RA. Don’t hold it against them. PCPs are generalists who know enough about a huge variety of conditions that they treat or, in some cases, can identify when someone needs to see a specialist. If you experience this situation, you may want to print out information about rheumatoid factor and seronegative RA to show them. You may also ask that they run an anti-CCP blood test, which can be a more accurate indicator.
Preparing to see the rheumatologist
Unfortunately, it’s quite common to wait several months to see a rheumatologist. But you don’t have to just sit and twitch — there are things you can do to prepare for your appointment.
Tracking your symptoms using a symptom diary or an app such as Arthritis Power or Track + React can help you present a clearer picture of your symptoms. Both apps allow you to print out reports summarizing the results of the data you have entered that you can share with the rheumatologist.
Putting together 1-2 pages with your medical history can also be a help. When you see the rheumatologist, they will take a medical history covering both your general health, as well as the symptoms that brought you to see them. This can take quite a long time, so bringing two copies of your summary can make the process much more efficient. Use bullet points to list your vaccinations, injuries, surgeries, childhood illnesses, and so on. Use the same approach to summarize your recent symptoms. Make sure you bring copies of your blood test results, as well as copies of any x-rays your family doctor may have ordered.
You may also want to do a bit of research about RA and its treatment so you can prepare questions to ask when you see the rheumatologist. Be aware that there is a balance between being well-informed and reading so much that you freak yourself out. If you start getting very anxious, perhaps it’s time to stop googling.
The first appointment
There are three elements to making an RA diagnosis: medical history, blood and imaging tests, and the physical exam. If you have prepared the summary of your medical history, that part of the appointment can be quite quick, leaving you more time for questions later.
Your rheumatologist may order new blood tests, as well as imaging tests of the joints that are troubling you. This usually includes x-rays, which will show if there is any RA damage in your joints. They may also order an ultrasound or even an MRI. These tests are more sensitive and can show the presence of inflammation.
The physical exam is usually quite extensive. The rheumatologist will go through each of your joints, moving them gently through a range of positions. Rheumatologists look for inflammation in the joints by palpating them to check for synovitis (inflammation) or if it hurts. Each joint that is inflamed and tender will be marked in a diagram.
Based on these tests, your doctor may give you a diagnosis of RA. If that is the case, they will also talk to you about medication and give you a prescription a medication to treat the disease. These are called DMARDs (disease modifying antirheumatic drugs). The doctor may also give you a prescription for NSAIDs (nonsteroidal anti-inflammatory drugs), to treat the symptoms of pain and inflammation. You’ll also get an appointment for follow-up, likely three months later.
What If you don’t get a diagnosis?
It is possible that the rheumatologist might not diagnose RA. There may be a couple of reasons for this. One is that you don’t have RA, but perhaps another kind of inflammatory arthritis. The symptoms of these types of autoimmune diseases often overlap, sometimes making it difficult to distinguish between for instance RA, lupus, and psoriatic arthritis.
If you have RA, it can also take quite a while to get diagnosed. Some people have to see several doctors in order to find someone who can give them a diagnosis. This can be because RA can be very difficult to pin down, especially in the early stages of the disease. If the rheumatologist doesn’t give you a diagnosis, but your symptoms persist, keep pushing. Ask your family doctor for a referral to another rheumatologist for a second opinion.
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Lene writes the award-winning blog The Seated View. She’s the author ofYour Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.