I had posted this question earlier, however, I cannot find it posted on the forum. Possibly I did it incorrectly or this forum is not active. Anyways, here goes: My 21-yr old son had went to the doctor with a concern of his left index finger going cold and numb. After ultrasound and arteriogram, it was discovered he has one vessel instead of two in that finger. He was than referred to a hematologist who did a thorough workup which sent him to a GI specialist with a diagnosis Gilbert’s syndrome because of an elevated bilirubin. The GI also found an enlarged spleen. He also had a Positive ANA which brought him to a rheumatologist. After repeated blood work, he feels he has enough to diagnose him with lupus. He notes an antiphospholipid antibody, positive ANA, low platelet (but not critical) Non-Smiths test that alternated positive, negative and a DNA test. He originally stated he probably has an antiphospholipid problem that is sometimes diagnosed with lupus, but since he had no symptoms, can be a condition in itself. He is currently on an aspirin a day for this. His theory about the finger was he may have traumatized it being a goalkeeper in soccer and because he has thicker blood, it may have clotted the vessel. I had attempted to seek a second opinion to a teaching hospital, but my insurance (First Priority HMO) has denied it; since, their are rheumatologists in my Scranton Area. I am very frustrated and need some guidance on this. Can this be a correct diagnosis without symptoms? The doctor tells my son to stay out of the sun because it can cause a flareup, but he has spent 2 summers in the direct sun 8-10 hours a day doing landscaping, with no flareups or symptoms, rashes, etc? Does this make sense? I would appreciate any advise in what direction I should take with this problem. A Mom from PA
This is very complicated problem. One the surface it does sound like your son fits into the lupus category but all the information needs to be reviewed carefully. Your son may indeed have symptoms– remember the finger? I would seek a second rheumatologic opinion and if things still are unclear, have the local rheumatologists help with the fight with the insurance company.