If only figuring out if you have lupus were as entertaining as a Jeff Foxworthy joke, but most times, it's not. It can be a very frustrating, confusing, and tiring process.
I received an e-mail recently from a nice young woman who was upset because her doctor seemed unsure of her lupus diagnosis after he told her she had lupus and started treating her. That is a very frustrating experience, but lupus can be a hard thing to diagnose. That's why doctors came up with the 11 Criteria for Diagnosing Lupus. Doctors consider that if patients have four of the 11 criteria, the patient likely has lupus. The list reads as follows:
Malar rash-- the malar rash is a rash that you get on your cheeks that runs across the bridge of your nose. It's often called a butterfly rash because it looks like a butterfly. My malar rash is only noticeable to me and those who love me. It's very faint. I actually have one now, and I'm guessing no one at work or my husband notices. (Not that he doesn't love me. If I were of a mind to point it out to him, he'd say, "Oh yeah. You do." He's just not a visual person). My therapist was actually the first person other than myself to notice my malar rash. I walked into her office one day, and she said, "What's wrong with your face?"
Sun sensitivity--for me, this happens in many forms. Doctors generally will look for a rash in response to sun exposure. I get this, but also, my malar rash is worsened by sun exposure. Not only that, but the sun hurts. When I go out in the sun, it feels like someone is sticking lit matches onto my skin.
Discoid rash--I don't have this one. A discoid rash is a raised, scaly rash. I'm not very familiar with the appearance of this rash, but I'd guess it's disc shaped.
Mouth sores--my least favorite lupie symptom. Before I received lupus treatment, my mouth sores were so bad. I was miserable. They were on my tongue and on my cheeks. I even had sores that didn't hurt on the roof of my mouth. I didn't even know those existed until the doctor told me about them. Sometimes lupies get sores in their nose, but I don't.
Joint pain--this is my most persistent lupus symptom. My joints always hurt, but the pain does range from bearable to excruciating. Popular joint pain sites for me are my feet, hands, knees, and elbows. Sometimes, I'll get pain in the hips, ankles, and even on my ribs.
Swelling of the lining of lungs and heart--I'm not very familiar with this symptom. I once had a doctor tell me I had swelling of the heart, but then a few weeks later, he said I didn't.
Kidney disease--I don't have this one, but my sister does. My doctor actually just told me that my auto-antibody that's linked to kidney disease wasn't high but needs to be watched. It would be nice if I could remember which auto-antibody that was. If I did, I'd be nice and informative.
A neurological disorder--if I were being honest with myself (which I guess I'm being now), I'd go and get this one checked out. Doctors consider that lupies have neurological disorders if they have seizures or psychosis, but maybe they should examine this a bit more. Lupies also have something called "lupus fog" which is a bad case of forgetfulness. I also get these horrible headaches. I fight off depression. I get dizzy. I've fainted and awaken confused twice in the past few weeks. I had a brain scan about five years ago, and the doctor said I had plaque on my brain which is common for someone with lupus. I guess I should go to a neurologist again or at least tell my rheumatologist of my latest problems. Also, when I type, I'll type words that make no sense. Instead of typing, "I need to go to the store." I'll type, "I need to go to the cookie." It's really weird. And lately, I'll be talking and lose my thought mid-sentence, or I'm not able to remember common words, or I'll mix up the structure of my sentence.
Low blood count--this one has caused my doctors no end of confusion and worry. My anemia gets so bad, my doctors often worry of heart failure. Lupies can have low red count, platelet count, or white count. The reason why this one has been hard for me and my doctors is that my low blood count is caused by three things, lupus, iron deficiency, and sickle cell trait. Lupus anemia can be treated with the usual lupie treatments. Iron-deficiency anemia is treated with iron, of course. From what I'm told, lupus anemia is not helped by iron treatments.
Positive anti-nuclear antibody test--this test was an interesting one for me. My doctor ran this test on me for years because she often suspected lupus, but it never came back positive. Then my cardiologist, after he told me I had the swelling in my heart, ran anti-nuclear antibody test, and it came back positive. My rheumatologist at the time said that different labs can have different results.
Positive results for lupus indicative blood tests--This would include a positive anti-double stranded DNA (I've got this one), anti-Sm, anti-phospholipid antibody, or a false positive syphllis.
Let me make sure I didn't miss any... Nope, they're all there, and I've been diagnosed with seven (eight, if I counted the heart swelling, which I don't, and nine, if I counted the neurological disorder, which I won't) of the 11 criteria. I've found that doctors won't diagnose lupus if you don't come back with the positive blood tests, and you could have nine of the 11 criteria. I had met five of the Criteria and there wasn't a diagnosis until the blood test came back positive.
Let's try this again. You may be lupie if you have a malar rash, mouth sores, sun sensitivity, discoid rash, joint pain, anemia, kidney disease, swollen heart or lungs, positive anti-nuclear antibodies, positive lupie indicative tests, or neurological disorders. That's a mouthful. Mr. Foxworthy, your job is safe.
Have a lupie day!