The Diagnosis

Everything started when I came back from visiting my friends and family in Hungary. That week was extremely emotional, even traumatic for several reasons, but let’s not go into details. The first symptom was my fingers getting numb and turning pale for a couple of minutes. It had happened randomly, and the cause usually was not touching something cold. Research studies explained that it’s called Raynaud’s syndrome. Cold may not be the trigger. Hormone imbalances or stress can trigger it as well. It was weird and scary but it wasn’t enough to take me to the doctor. A few weeks had passed, and all of a sudden, my fingers and wrists were acting up, meaning, I had joint pain in every single finger including the thumbs, as well as in both wrists. Oh well, my two hobbies which are graphic design/video editing and writing both require typing and constantly using the touchpad on my laptop, not to mention my job. My hands were just tired. That’s what I thought. I ordered good braces. I tried to rest them. Nope, they didn’t get better. They got worse. Let’s try topical creams. They didn’t work either. Months later, finally, I just had enough. My hands were swollen and achy, especially in the mornings, and affected my daily life. I could hardly open a jar.

When I lose it, I lose it fast, so I ended up at the local urgent care in mid-November, 2024. The MD was amazing. He ordered lab work and X-rays. X-rays came back normal, but my sad little blood showed inflammation and positive results that may or may not indicate autoimmune disease. I wasn’t so happy, but he also told me that sometimes a positive test doesn’t mean I have an autoimmune disease. And here, in this post, I planned to complain…about my primary care provider who had misdiagnosed me a week later. I wanted to complain about her sending me to an orthopedist instead of a rheumatologist. But a few days ago, I read that some people wait years before they receive the diagnosis. The symptoms can mimic other illnesses. So, I am freaking lucky. Two months after my urgent care visit, I was informed that I had systemic lupus erythematosus (SLE). They took 14 vials of blood from me. Even though the only symptom I have for now is joint pain, SLE is showing up in my blood.  I also have microcytic anemia and hypercalcemia which in my case is caused by chronic ibuprofen use. Even before I had my bloodwork done, my rheumatologist put me on Plaquenil which is a medication that was originally for malaria but can prevent organ damage and flare-ups.

After I got the phone call about the diagnosis, I sat down on my bed. First, I laughed. Hey! I have a wolf living inside of me. But then I just looked at my entire life. I have never had any major illness. The only time I spent two days in a hospital was when I had tonsillectomy at age 3. I don’t have allergies. I have never broken a bone. Bang! Now I have a lifelong illness. I admit, I felt sorry for myself for a minute. Now what? What else? What can I do? Should I change my diet...or something...? And that’s where I am now, in research mode.

Image credit: Medscape