Undiagnosed and frustrated: RA? Lupus?
Hi. I’m new to the forum and want to share my “journey” through the world of AI disease! I was referred by my ortho surgeon to a rheumatologist after blood work revealed an elevated CRP and Sed rate. I had several foot surgeries involving “melted tendons” (my surgeons words). He always found inordinate amounts of inflammation during the 5 surgeries he had performed. He sent me for tests following the second surgery but RF and Sed were normal. Several years and three surgeries later he re-tested because I had developed debilitating fatigue, nodules on my fingers, along with extreme joint pain in my hands and wrists. He put me on a round of steroids and had my appt expedited.
Of course the steroids calmed down the symptoms but the rheumy did find warmth and swelling in fingers, wrists, knees, elbows, and ankles. He felt sure my inflammation markers would be through the roof. Thus it began…sigh. All tests were NORMAL He repeated them in a month with the same result. After the third month with clinical findings (still normal test results) he started me on Plaquenil. It slowly calmed down the joint pain over a few months. All tests still normal. About 6 months into treatment I developed photosensitive rashes, and chronic mouth ulcers. The fatigue continued and the swollen, inflamed joints were present at every 3 month follow-up. I then had a positive ANA at 1:160 Homogenous pattern. All other tests were normal. Tests I had were: EBV which revealed past infection (this had occurred a couple of years prior to the arthritis symptoms), Lyme disease, CBC, HLA-B27 antigen, protein electrophoresis, cyclic citrus peptide AB IGG, CPK, CRP, CBC WITH DIFFERENTIAL, comprehensive metabolic, Vit D, Vit B12, urinalysis, Sjogrens A&B, glucose and phos, CMV AB IGG &sign, ferritin, iron +TIBC, HEPATIC FUNCTION, CARDIOLIPIN ANTIBODY, Lupus anticoagulant (my daughter has this. Other daughter has MS) calcium, thyroid.
After ANA remained positive and increased to 1:320 he calls me ANA positive and no longer tests for it. About a year ago I developed mild Reynaud’s, chronic anemia, low calcium. and low Vit D and elevated EOS. I developed thyroid nodules and had thyroidectomy April 2015. All other tests remain negative. Yesterday I got the results of my last blood work. Anemia improved but still there, Vit D and calcium normal. EOS is11.5.
I remain in a constant state of frustration at the lack of diagnosis. He says he’s treating me exactly as he would be if RA and Lupus tests were all positive. It still drives me crazy. I don’t even know how to answer the question from other doctors as to why I am on Plaquenil and Methotrexate. I just say “well…it appears I have SOMETHING…” I know you guys can relate to all of this. It has now been 3 years since my first rheumatologist visit.
Your thoughts would be very appreciated.