Journey to my Lupus Diagnosis

Lupus is an autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Meaning- the immune system cannot tell the difference between foreign invaders and healthy tissue.

Lupus can affect many different body systems — including joints, skin, kidneys, blood cells, brain, heart and lungs and therefore can be difficult to diagnose since its signs and symptoms mimic those of other medical conditions.

In most cases, there are certain criteria people must meet to be diagnosed with Lupus, BUT keep in mind that sometimes, some may meet none, some and/or all of the criteria, so even if you think you don’t meet the criteria, there is still a possibility of lupus. Talk with your healthcare provider about all your concerns. Be an advocate for yourself.

My journey started around October 2018. I started experiencing all kinds of weird ailments. I was experiencing skin issues (itchy hives), low grade fevers almost daily, unexplained hair loss, fatigue, body aches. Then experienced shortness of breath and THE WORST chest and abdominal pain ever! I saw my primary care provider about 3 times, went to urgent care twice and the ER once.

The most frustrating and annoying symptom I was experiencing was the painful, uncontrollable itch. It was so bad that I was not able to sleep or complete any daily activities (e.g. work, take care of family, self…). I would either be wrapped up in ice packs or soaking in an ice bath, just to get a minute of relief from the itch. You may think I am exaggerating, but I am not. 😦 Let’s just say I was getting hives daily. They stung, hurt, itch, burned and just felt like fire ants biting me from inside. [If you haven’t already, check out my urticaria post-pics included.)

Since there was no relief after visits to my PCP and dermatologist, it was time to do/request an allergy panel. Got that done and found that I had a slight reaction to cow’s milk….ONLY. Everything else came back negative. I tried no dairy for a while, and it made no difference in my symptoms.

Next there was shortness of breath, chest pain and abdominal pain. I have never experienced anything like that before. It scared me. The ECGs performed on me showed sinus tachycardia (fast heartbeat), all of my abdominal imaging tests came back negative with the exception of revealing pericardial wall thickening around my heart which was indicative of pericarditis (at 34 years old!!). My chest x-ray was fine. At that point, I thought I was going crazy. I was experiencing all this stuff, but nothing showed in any of the tests that docs ordered. It was very depressing. I didn’t want people to think I was making all this up. What I was experiencing was very real, even if it wasn’t apparent to anyone else.

I was still experiencing shortness of breath on exertion, chest pain, hair loss and itch, so I visited my PCP again and asked for an autoimmune panel to be done. Since we weren’t getting answers anywhere else, one of the doctors I worked with suggested an autoimmune panel. I’m so thankful he did, because without that suggestion, I probably would still be wondering what the heck I was suffering from. There were many conditions it could have been…lyme disease, parasitic infection, infection, etc…

I should mention that I had 5 TOTAL autoimmune panels done from November 2018 to February 2019; 2 ANA results came back negative, and 3 came back positive with titers of 1:640, 1:1280 and 1:1280. Antinuclear antibody (ANA) is basically a test used help evaluate a person for autoimmune disorders that affect many tissues and organs throughout the body (systemic) and is most often used as one of the tests to help diagnose systemic lupus erythematosus (SLE).

Since the last two ANA panels came back positive for me, it was time for me to see a rheumatologist. It wasn’t that easy. Every rheumatologist office I called had waits of months! I was finally able to get an appt. scheduled, but wouldn’t be until May 21st 2019!!! Crazy, right?? Luckily, the allergist I was seeing knew the rheumatologist I was going to see and worked some of his magic, or at least discussed a plan of care for me while I wait to see the rheum. I was on so many medications at this point: cyclosporine, xolair, fexofanadine, ranitidine, hydroxyzine, doxepin. Then had plaquenil, dapsone and prednisone added. So currently- all the meds I just listed are what I am taking now.

When I saw the rheumatologist, he had reviewed all notes from my PCP and allergist and discussed everything he thought I could be suffering from- SLE vs. Undifferentiated Connective Tissue disease. He did mention that I did meet criteria for Lupus, but wanted to order more tests. Got those tests done, saw him at a follow up, and when I asked if I had Lupus…he said “no question.” That was March 7, 2019.

After 6 months, and multiple doctors (PCP, dermatologist, allergist, cardiologist, and rheumatologist) visits, I was finally diagnosed with Lupus. It took a whole village and I am SO thankful to all <3!

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