Taking Control: The Road to an Autoimmune Disease Diagnosis Is Long

In the United States alone, more than 50 million people struggle with an autoimmune disease. That number is probably a lot higher, especially when you consider how long it takes to receive an official diagnosis. If you’re reading this article, chances are you or someone you know is experiencing symptoms of an autoimmune disease. Let me begin right here by saying I have walked down this road myself, having been diagnosed with not just one disease but two, and the journey was a long one.

I’ve learned a lot along the way, and hopefully some of the following tips will help you gather your information and your strength, so you can be more prepared for dealing with a diagnosis once it happens. Here are some things that I feel can help.

Take Stock of What You Feel and What Might Have Triggered It

The trouble with diagnosing an autoimmune disease stems from the fact that every person experiences different symptoms at different times, and there is no definitive timeline in which to anticipate the next attack. There are, however, several symptoms that are common among the 80+ autoimmune diseases. They include the following:

Fatigue
Muscle aches
Joint pain
Redness and swelling
Low-grade fevers (between 6°F and 100.4°F)
Difficulty concentrating
Digestive problems
Numbness or tingling in the extremities, particularly the hands and feet
Hair loss
Skin rashes on various parts of the body

When you’re actively experiencing these symptoms, it’s called a flare; and when they go away, you go into remission. Fatigue is commonly associated with working long hours, so most people dismiss it as a symptom. If you’re feeling abnormally tired, or suddenly feel weak or sleepy during the day, be sure to note it as it could be a sign that your body is trying to share with you.

Muscle aches can happen to all of us, but if you haven’t done anything strenuous and still feel achy or sore, don’t ignore it. The important thing to do here is to begin noticing how you feel and what, if anything, caused it. If you’re feeling exhausted, it may be more than stress. And certain foods, like sugar, dairy, or those that contain gluten, may even play a role, so now’s the time to start keeping records of everything you’re experiencing.

Record Your Journey

If you don’t consider yourself a writer, take heart. What I’m suggesting is not for anyone else to read or critique; it’s for you to get a clearer picture of what’s going on in your body. For instance, if you notice that your hands or feet are suddenly numb, but you’re not sitting in a position that would pinch a nerve or cut off feelings of sensation, then write it on your daily list. Include the time of day, where you were, and what you were doing when it came on. Don’t ignore anything (you’ll see I say that a lot) because you never know what’s relevant and what isn’t.

The second thing you can use your journal for is to explore how you feel as a whole. Are you anxious? Confused? Angry? Does the symptomgo away quickly or linger? Remember, this is your health, and the more you write down, the more you’ll have to share with your physician when you see him or her.

Learn Your Family Health History

Experts believe that autoimmune diseases have a genetic component. According to Johns Hopkins Medicine, “Close relatives are more likely to develop the same or a related autoimmune disease.” For example, if your grandmother had lupus, you may be more at risk of developing it or another autoimmune condition than someone without that family connection. Studies haven’t confirmed that specific diseases are hereditary, but you have a greater than average chance of having an AI disease if someone in your family has one.

Most of us don’t talk about our medical history with our extended family, but learning what your aunts or uncles have experienced may hold the key to unlocking the mystery that you’re experiencing. Try to get as much information as you can from your first-degree relatives, including your parents, siblings, cousins, and grandparents. The more you learn, the better your chances of shortening the timespent trying to reach a diagnosis.

Research and Record Your Symptoms

The internet can be a helpful resource when trying to decipher whether or not your symptoms are associated with a specific condition, but research with caution. You’re not trying to self-diagnose, but rather, compiling a list that you can share with your doctor. It’s all too easy to fixate on a particular autoimmune disease when you’re struggling to understand what’s going on in your body, but try to be calm. Write down what you’re feeling, including the date, and then go on with your day. When it comes time to meet with a doctor, take your list with you. If you’ve noticed a pattern among the symptoms, be sure to point it out. Using a highlighter can help you analyze your list, too.

Meeting with Your Doctor

Depending on your insurance plan, you may need to see your primary care physician before seeing a doctor who specializes in treating autoimmune diseases. If you need to start with him or her first, be as clear as possible when explaining your symptoms and your concerns about having an autoimmune disease. Tell the doctor about your family history, if you have one, and share your list with him or her. Getting a quality referral often depends on presenting your case in a compelling way. One way to get better results is to focus on your primary complaint. If you have digestive problems, mention them. And if you have time, ask your family members who they see for their illness. Online resources, like Facebook groups and community health boards, can also point you in the right direction.

Getting Another Opinion

If you receive a diagnosis, treat it like you would if you were told you needed surgery. Getting a second (or third) opinion is not only smart, most doctors expect you to do it. Contact your insurance company to find out what they will and won’t cover before you do, though, because it’s important to stay informed about the costs involved. And be especially wary of a doctor that refers you to a psychologist instead of an AI specialist. Your symptoms are real, and your doctor should never treat you as if they’re all in your head.