The Road to Diagnosing Autoimmune Disease

Any guess as to how long it takes to diagnose an autoimmune disease?  According to the AARDA it takes about 4.5 years.  And it didn’t surprise me to hear that.  With more than 100 types of autoimmune disease and a broad spectrum of symptoms, getting a diagnosis is like taking a long drive to an elusive destination without the benefit of a working GPS.  Even though more than 20 million Americans have some type of autoimmune disease, I’m betting that each of the journeys to diagnosis was different. 

I’m also betting that I’m not the only person who had an “a-ha” moment when I was finally diagnosed.  It’s human to search for patterns and meaning – sort of like the people who find an image of Jesus on a pancake or piece of toast.  But seriously, hindsight allows us to easily connect all of the dots that otherwise seem so completely random.  In retrospect, I recognize the progression of my symptoms.  I also recognize that there were times when I questioned my own judgment.  Am I a hypochondriac? (Okay, maybe that was a fair question, because I am.)  Am I being dramatic?  Am I just under too much stress?  Or just getting old?

There’s a line of reasoning that holds that the simplest explanation is most likely the correct one.  It’s called Occam’s Razor, and while this is an oversimplified definition, you get the point.  It’s the logic that tells us that if we have a headache, it’s most likely a result of tension, allergies, or sinus pressure than a brain tumor – in spite of what Dr. Google might suggest. Because of my colorful health history I’ve had to remind myself of this more than once over the past 15 years.  I’m lying.  I had to remind myself of this at least a million times. 

10 Common Symptoms of Autoimmune Disease

The road to diagnosis can be long because there are many symptoms of autoimmune disease, and a lot of variation in the symptoms and in how they present.  They are also symptoms of other conditions. You don’t have to have all of these symptoms to have an autoimmune condition. And you may have some of these and not have an autoimmune disease. The most common symptoms include:

1. Fatigue
2. Skin rashes
3. Recurring fever (typically low grade)
4. Achy muscles
5. Swelling and redness
6. Joint pain
7. Hair loss
8. Numbness and tingling in hands and feet
9. Digestive issues
10. Swollen glands

The symptoms that would lead to my myositis diagnosis began in late 2016, and I was diagnosed two years later.  They were subtle at first – mild stiffness and soreness in my hands that I attributed to arthritis, because I am north of 50.  Over time I developed more prominent symptoms including shortness of breath and a resting heart rate of about 125 beats per minute.  My cardiologist diagnosed me with atrial fibrillation, which ultimately required a cardiac ablation, a procedure where certain areas of the heart are scarred in order to restore correct electrical signals.

But damn, I was so tired.  And the breathing was getting worse.  I was anemic (the result of a vegetarian diet which I’ve since abandoned).  I kept waiting to feel better.  But my muscles were sore.  I developed some mild skin discoloration in certain areas and it would occasionally itch or burn. My neck felt stiff and weak. It was hard to physically hold my head up.  I felt congested all of the time and my voice became hoarse and weak. The symptoms were insidious – gradual in their onset and progression, until one day I tried to remember the last time I felt good.  I couldn’t remember.   

Be Your Own Advocate

Did you ever watch Hugh Laurie in the television show House?  He was a bitter and ill-tempered doctor.  If he had practiced medicine in Whoville instead of the fictional Princeton-Plainsboro Teaching Hospital, he would have out-grouched the Grinch.  But House was brilliant!  He was the solver of all medical mysteries.  I needed him. So I did the next best thing.  I consulted Dr. Google. Like any good patient, I took the time to prepare for my visit. I reviewed the results from my blood work, looking at trends and outlining values that were outside of the normal range. When you’re not getting the answers you need, it’s okay necessary to be your own advocate.

And there it was:  one result in particular caught my eye.  My creatine kinase (CK) had been uniformly high.  CK is an enzyme found in the heart, brain, skeletal muscle, and other tissues, and when there is muscle damage, increased amounts are released into the blood.    I learned that one of the causes of elevated CK levels is a disease called myositis.  I had all of the symptoms.  Then I laughed at myself because it’s a very rare disease and I’m a hypochondriac.  I felt desperate and I was struggling to function, so I asked for an ANA test anyway (the primary test to help identify the presence of autoimmune disorders) and it was positive.  And with that – and an unanticipated two week hospital stay – I finally had an answer.  Dr. Google was right.

If you’ve been diagnosed with autoimmune disease you know that it’s as much a process of ruling conditions out as it is ruling them in.  You also may know that it’s not uncommon to have more than one autoimmune disease.  Autoimmune diseases are chronic. They are not curable, but manageable. And because they’re not predictable they leave us susceptible – chronically exposed to uncertainty.

You can’t get to courage without walking through vulnerability.

Brene Brown

Living with a chronic illness requires patience –as we seek a diagnosis, as we wait to see if the treatment will work, and as we learn how to adjust our life within the confines of new limitations. These conditions are unpredictable. They threaten our confidence. They make us feel defenseless.  

But I’m learning to live within this heightened state of vulnerability.  It has forced me to acknowledge and examine all of the emotions that have been exposed by my foray into uncertain territory; forced to face grief and loss. I used to think that my vulnerability was a weakness.  But it’s not.  Courage is born of vulnerability – and that is my strength.