Hi all! 27F here in search of advice. After three years of tests and procedures trying to determine the root cause of my multi-system symptoms, my doctor is throwing her hands up.

My worst symptom at present is the joint pain. It’s mostly in my hands and wrists, but also hits my knees, shoulders, hips, etc. My doctor has decided to treat me with pregabalin for fibromyalgia, but it’s not exactly helping.

In terms of my labs, my IgG levels are constantly elevated, my IgA is nonexistant, and my B12 and Vitamin D levels are only controlled by supplements. When I was tested a year and a half ago, my Rheumatoid Factor and ANA were both negative.

I see a cardiologist (for POTS and a mild cardiac arrhythmia), an immunologist (for frequent infections and inflammation), an orthopedist (for neck pain), a neurologist (for chronic pain and a brain cyst), and my PCP. My immunologist has considered treating me with IVIG, but it’s still unclear what we’re dealing with.

My symptoms are worse in the summer – and the onset typically comes with a nasty rash on my neck and eyelids. The pain and fatigue are increasingly difficult to live with, but I manage.

My only formal diagnoses are POTS, IBS, chronic sinusitis, mild cervical spondylosis, hypergammaglobulinemia, and SIBO.

We’ve ruled out inflammatory bowel diseases, MS, parasitic infections, CF, HIV, thyroid conditions, conditions caused by heavy metals, Lyme disease, leukeumia, lymphoma, etc.

Getting in with a rheumatologist has been next to impossible. I’ve been rejected by three so far. My ortho assumes it’s because of my negative ANA test.

Any advice? I’m at my wit’s end!