Health Struggles with Mysterious Symptoms
Female, age 28 My health troubles began when I was just 15 years old, when I was diagnosed with Psoriatic Arthritis, presenting with psoriasis affecting my face, scalp, and the upper portion of my body. This condition was accompanied by significantly swollen lymph nodes, episodes of night sweats, and joint discomfort, which subsided with steroid treatment. Over the subsequent twelve years, I managed intermittent scalp issues along with occasional joint pain, particularly in my back and right wrist. I also endured strange sensations in my ankles, which only occurred while lying down but dissipated upon standing. However, over the past two years, I began experiencing urgent bouts of yellow diarrhea multiple times daily. In 2024, I caught the flu, and two weeks afterward, I developed a rash that spread across my face and chest—splotchy and red, yet neither itchy nor painful. Along with this, I suffered a fever, a severe migraine that lasted six days, neck pain, and swollen lymph nodes. I was hospitalized for six days, during which tests were conducted to rule out meningitis, which were negative. Despite attempts to relieve the migraine, nothing worked. Eventually, I consulted my general practitioner, and soon after, I was referred to a rheumatologist when I began experiencing numbness and a deep ache in my hands during the night. At the rheumatology clinic, I underwent tests for inflammatory markers and lupus. Fortunately, lupus tests returned negative, but my CRP and IGA levels were elevated. A course of methotrexate provided no relief, and I was taken off it. Shortly after, I experienced swelling in my mouth and developed several ulcers, a problem that has been persistent. Additionally, I started feeling pain in my shoulder, collarbone, and sternum. My rheumatologist then prescribed Humira; however, after seven doses, I still found no improvement. Frustrated by a diagnosis of fibromyalgia, I decided to seek a second opinion from a different rheumatologist. My new rheumatologist, during our first appointment, ran tests for lupus and my thyroid function, all of which came back negative except for a notably elevated CH50 level (>60). I have yet to hear back regarding these results, but I harbor a sense of skepticism about the outcome. She advised me to discontinue Humira due to the random episodes of hives and swelling in my uvula. Current health issues include consistently high CRP and IGA levels, along with an elevated CH50, yet tests for lupus, Lyme disease, Epstein-Barr virus, HLA-B27, and rheumatoid factor have all returned negative. A visit to a gastroenterologist led to a diagnosis of IBS, and I consulted a dermatologist regarding a biopsy for my malar-like rash; however, she declined to proceed with the biopsy on three separate occasions, citing negative lab results.
Answers (1)
8/27/2025, 8:53:24 PM
OpenHealth AI
I understand that you've been dealing with a complex array of symptoms over many years, which can be incredibly frustrating and worrisome. Your journey through various diagnoses and treatments, including psoriatic arthritis, and now gastrointestinal symptoms and skin issues, is understandably exhausting. Let's consider critical next steps to help you manage your situation more effectively.
Overview of Symptoms
Your symptoms include:
- Psoriatic arthritis with skin involvement
- Episodes of swollen lymph nodes
- Severe migraines and neck pain post-flu infection
- Urgent bouts of yellow diarrhea (IBS diagnosed)
- Numbness and pain in hands and various joints
- New skin rash and swelling, linked to medications
Explanation
Your elevated inflammatory markers (CRP, IGA, CH50) suggest that there is still underlying inflammation or an autoimmune process at play. Diagnosing autoimmune or chronic conditions can be challenging, especially when common tests return negative. It’s important to work closely with your healthcare team to explore other potential causes or management strategies.
Prioritized Next Steps
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Keep a Symptom Diary: Document the timing, duration, and nature of your symptoms (including diarrhea and any migraines), along with any potential triggers (like food, stress, etc.). This can help identify patterns and assist your healthcare providers in tailoring treatments.
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Follow Up on Test Results: Once you receive the results of your elevated CH50 level, discuss what it means for your condition. This could provide insights into whether there’s an underlying complement or autoimmunity issue that needs further exploration.
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Consult a Gastroenterologist for IBS Management: Since you've been diagnosed with IBS, discuss dietary changes (like low FODMAP diets) and medications that might help manage diarrhea. Probiotics may also be beneficial for gut health.
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Consider a Referral to a Specialist: Given the persistence and variety of symptoms, it might be beneficial to see a specialist who focuses on the intersection of rheumatology and gastrointestinal issues—such as a rheumatologist with experience in complex autoimmune disorders or a gastroenterologist specializing in functional gastrointestinal disorders.
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Explore Pain Management Strategies: For fibromyalgia or chronic pain, consider non-pharmacological approaches like physical therapy, gentle exercise (like yoga or swimming), or cognitive behavioral therapy, which may help alleviate some pain and improve quality of life.
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Review Current Medications with a Pharmacist: Discuss your ongoing symptoms, particularly with the potential side effects of any medications, including Humira. If you've experienced hives or swelling, it may be worth looking into alternative treatments.
Conclusion
It's vital to maintain open communication with your healthcare team and advocate for your health. You deserve a comprehensive approach to manage your symptoms effectively and improve your quality of life. Please keep me posted on your progress or any further questions you may have along the way.
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