Question:
My daughter is 17 and has been seeing a nephrologists yearly for the last 6 years for Benign Famillial Hematuria and just recently he has been concerned from her lab work and symptoms, he tells me something is rumbling and that there is no definite diagnosis but that it is probably an autoimmune disease. These are her symptoms: Blood and protein in the urine, vitiligo, rash (hives) for the last 2 years which is very sensitive to the sun, sore joints, 2 positive tests for ANA, constant runny nose with sores, she has red cheeks on occasion but not the typical butterfly rash, her labs always come back with C-3 being flagged, cant remember if it is high or low and she has frequent bouts of diarrhea. From these symptoms would it be accurate for my doctor to suspect a autoimmune disease such as Lupus or could he be thinking of something else. I just wish he would tell me what he thinks is causing the ''rumbling'' he did mention Rheumatoid Arthritis but said her last test came back negative. Can you help me out, is there a more definite test that I should be asking for? Or is this a waiting game?
Answer:
This may be a waiting game as many connective tissues diseases take years (a couple or even more) to add enough symptoms to make a diagnosis. It is possible she has lupus and you can ask for the antiDNA and ENA to be ordered if they have not already been done. In addition, it would be more worrisome if she has both protein and Red blood cells in her urine together. As long as she is closely watched, there will be treatment as is indicated (even if the diagnosis is not fully confirmed). Also there are some people who have some symptoms of lupus, but never get enough problems to meet the diagnostic criteria for lupus (ie they are under the radar screen). I think your doctor is telling your daughter all that he knows as there is no firm diagnosis. Best of luck.