You’ve read about the signs or symptoms of a possible autoimmune condition. Now you want to be sure, so you make your doctor appointment….
When you tell your doctor about your symptoms and concerns, your doctor, as my doctor did, may tell you that you could have an autoimmune disorder, andthat you should at least be tested further. At my appointment, when I heard the words “autoimmune disorder” my first reaction was “What????! I have a great immune system!” My doctor replied, “Yes, you do. But your great immune system is attacking your own body.” I really didn’t know anything about autoimmune conditions, but being the good doctor that he is, my doctor had a whiteboard ready and drew pictures for me while he explained leaky gut syndrome (an autoimmune condition). I didn’t totally grasp it all, so my only question was “Well, what now?”
He ordered further testing and I went home and started researching so I could get a little more understanding (and I’m still learning). On my follow up visit, his suspicions were confirmed.
Now, even though I titled this article “What to Ask Your Doctor…”, I’m thinking the questions could be infinite, depending on each individual, so I’ve touched on some basic guidelines, to help you think about what YOU want to ask, besides just blurting out, as I did: “What???!!! “ and “What now??!!”
If you have a doctor who is experienced and educated about immune disorders, he or she will probably order the necessary tests and possibly give you a diet plan that can remove the most commonly “offending” foods. Even with a knowledgeable doctor, you might want to be armed with a little more information so you can ask questions, clear up any confusion and get the answers you need.
What’s Involved in an Autoimmune Disorder Diagnosis?
Many people who have autoimmune disorders have a difficult time getting a correct diagnosis. In some cases, people are mistakenly diagnosed with other conditions. Other times, doctors tell patients that their symptoms, which are often vague in the case of an autoimmune disorder, are just in their heads or are stress-related. The quest to find a doctor who can arrive at a proper diagnosis can be difficult.
There are more than 80 different types of autoimmune disorders, and the diagnosis of each condition varies somewhat. In general, though, the diagnosis of an autoimmune disorder requires:
- a combination of blood tests
- a thorough review of your history and symptoms
- a physical examination.
Blood tests to diagnose an autoimmune disorder may include:
- Auto-antibody tests. For some autoimmune disorders, there are blood tests that can look for auto-antibodies in the blood. Auto-antibodies are antibodies made by your immune system that cause it to attack your own cells, tissues, and organs.
- Inflammation and organ function tests. Since certain autoimmune disorders can cause organs, such as your kidneys or liver, to function abnormally, your doctor may perform tests to see if your organs are working as they should.
Tips for Getting a Correct Autoimmune Disorder Diagnosis
As the patient in this situation, there are some things you can do to increase your chances of getting a correct autoimmune disorder diagnosis, including:
- Knowing and communicating your family history. Autoimmune disorders tend to run in families, so ask around your family to see if any family members have or had an autoimmune disorder. If you do have a family history of an autoimmune disorder, tell your doctor about it so that he has that information on your autoimmune disorder risk when evaluating your symptoms.
- Tracking your symptoms. Symptoms of autoimmune disorders can be numerous and can come and go, so it’s a good idea to keep a journal of your symptoms. In your journal, list any symptoms you are experiencing and details about when you have them: what you were doing at the time, what you ate and drank, what medications you took, if any. Take this journal with you to your appointments so that your doctor can review it.
- Asking about autoimmune disorder tests. Sometimes doctors do not automatically perform blood tests for autoimmune disorders. There is no single test that can confirm a diagnosis of an autoimmune disorder, but there are tests that can suggest or rule out the presence of a suspected autoimmune disorder. If your tests come back negative, it can sometimes help to do a repeat test at a later date, since false-negative tests results are possible when certain autoimmune conditions are in “remission.”
- Considering a second opinion. If you have persistent symptoms that your doctor cannot explain, consider seeing another doctor for a second opinion. Ask around for referrals to good doctors who are known for diagnosing difficult-to-recognize conditions like autoimmune disorders.
- Seeing a specialist. If your primary care doctor suspects that you may have an autoimmune disorder, ask to be referred to a specialist. Depending on your specific condition, there is probably a specialist who has experience in diagnosing and treating it.
- Looking out for other disorders. Since it is not uncommon to have more than one autoimmune disorder, talk with your doctor about the possibility of another diagnosis if your current treatment is not working well enough to manage your symptoms.
Because symptoms of an autoimmune disorder often come and go over time, it can take months or even years to confirm an autoimmune disorder diagnosis, even when your doctor suspects that you have one.
When you’re going through the diagnostic process for an autoimmune disorder, a little patience is usually in order. You can help speed the process of your diagnosis by following the tips above and by continuing to educate yourself because you are your own best advocate.
Some excerpts adapted from an article by Krisha McKoy