I'm in no-diagnosis Never-never Land too. I have a CFS diagnosis, but not a lupus one.

I've had two ANA tests over a fourteen year span, both "negative", but with no actual reading recorded in titers. So I don't really take those seriously. Obviously they weren't done properly.

I have lesions...on my scalp, face, and back. I see a dermatologist for skin cancer care and she freezes them off, but she won't look into lupus. Apparently she just doesn't want to deal with the issue. She said I should go to a rheumatologist, but she doesn't know any for referrals.

I think I have lupus. I have so many symptoms of the illness that it seems almost impossible that I could somehow not have it. My opinion...most doctors don't want to get involved with something as complex as lupus, so there are patients all over the place who clearly have lupus, but don't have a diagnosis. There are some very reputable doctors who share that view...it isn't just something I dreamed up.

I've more or less given up hunting for a diagnosis. I don't have the money to go bouncing around from doctor to doctor with all the expense that involves. And I'm not looking one up in any phone book. I did that once and had to take tests for hepatitis and HIV at the Health Dept. after the doctor started a hepatitis outbreak with his total disregard for sanitation and sterile surgical procedures.

Skin lesions are a primary symptom of lupus. I think any doctor who ignores them doesn't even know the basics about the illness.

I was having neuro issues a while back and my rheumy told me that my CAT scan "Showed brain lesions consistent with lupus." The doc wasn't overlly concerned, because she was treating the disease very aggressively.

I hope you get some answers soon.

I had them at 34 the doctors did some tests for Ms said I did not have it and I got the hypochondriac want to be sick lecture. This was before, I got so bad only a true idiot could ignore it. I became very sick after my only child was born and my family doctor never thought I was a hypochondriac so he was trying to send me to specialists and trying to do tests that might help. This was a neurologist who started hung go with lesions and something about me made him think nutcase I did wonder until I read everyone elses story. My mom died at 49 about a year and a half before and she had been treated same way. Now I find out this is a lupus thing also but back then they thought Ms and I didn't care I just wanted a dx and treatment.

It sounds like you have discoid lupus. There is a big difference between DLE and SLE, Discoid-lupus is only lesions and scars. Whereas SLE, is in your blood and affects liver, kidney, joints and causes pain. I have had discoid lupus for 20 plus years and I am now bald and have permanent scarring
on hands, arms, back and scalp. 20 years later I have a slight elevation in my blood work ANA for lupus and my rheumatologist says its too low to be concerned. I think you should go see a dermatologist and request a biopsy of the lesions. I think you will feel better when you have answers to the lesion mystery. Yes, Lupus patients does have lesions as well, but if the ANA tests say no Lupus, then it's correct! I hope this helps you find some peace.