I was tentatively diagnosed with systemic lupus by my dermatologist when I showed up with a malar rash, sleep habits that varied from 10-12 hours a day (not normal for a 19 year-old), and ana blood tests with a high titration count. My follow-up visit to a rheumatologist had similar blood test results and my rash had cleared up due to topical corticosteroid use. I was also sleeping less. My rheumatologist seemed unimpressed with my symptoms and told me I might have systemic lupus, but I wasn't showing enough symptoms to be officially diagnosed. He also had no other suggestions as to what I might have. Nevertheless, I was told to act as though I do have lupus...stay out of the sun, continue to use topical corticosteroids (locoid cream), reduce stress, and avoid cigarettes and caffiene. 2 years later I am still having "flare-ups," where the rash comes back and I'm exhausted. I still take the same medication, because if I stop the rash gets horrible. I feel like I'm in limbo. Not feeling bad enough to actually be diagnosed with lupus, not feeling good enough to be well. Do I have to be hospitalized to be diagnosed? I know that my illness, if it is indeed lupus, isn't as bad as many individuals', and for that I feel very grateful. But I would still like some measure of certainty. I feel like a disease that I may not have is controllong my life. If anybody has had a similar psuedodiagnosis, I would appreciate any advice, information, support, anything. Thanks.
Nina; First, let me apologize for taking so long to respond to you. I was out of town for a conference.
The diagnosis of Lupus is not easy, especially for a doctor who is not experienced with the disease. Some tests take up to a year before positive diagnosis is made. There is a spectrum of illnesses related to the disease which can be easily confused with other ailments. It has been confused with other connective-tissue disorders, including rheumatoid arthritis, scleroderma, dermatomyositis and polymyositis. There is no guaranteed test which can tell doctor's that you do or do not have Lupus, therefore, a diagnostic critera has been established. However, it involves a long period of various testing. You DO NOT have to have all the following criteria:
* Butterfly rash
* Photosensitivity of the skin
* Ulcerative sores in the mouth or throat
* Arthritis like joint inflamation
* Chest/heart problems
* Kidney disorders
* Neurologic disorders (seizures, psychosis)
* Blood abnormalities
* Immunologic disruptions (false positive for syphillis, LE prep (attacking of white blood cells, abnormal anti-DNA, anti-Sm, Heightened ANA).
Lupus is known as "The Great Imitator" due to the large # of overlap symptoms with other chronic disorders. Most doctor's will try to eliminate the most serious of those other disorders (malignancies, serious infections and dysfunction of major organs). After that, if diagnosis is still in doubt and you are not seriously ill, most doctors will then just "wait to see what happens next". It sounds as if you are in the "wait and see" phase with your doctors. Most of us have been there during our 1-2 years of diagnostic tests! You are not alone! Your doctor is correct in advising you to take the precautions as if you have had a positive diagnosis. In this way, you may be able to control the symptoms better and perhaps even achieve remission.
I hope that I have been helpful. Take care of yourself
GREAT EXPLINATION SUSIE
The website for the Lupus Foundation of America has the official diagnostic criteria for Lupus. There are 11 elements and a minimum of four of them must be met in order to suspect a Lupus diagnosis. The patient does not have to have the symptoms concurrently.
Unfortunately, by these criteria, the doctor is right to hesitate in diagnosis. Exhaustion, while a prominent symptom (LFA reports that 81% of people with lupus experience extreme exhaustion) it is not on the official diagnostic list.
LFA's list of common symptoms (though not the ONLY symptoms experienced by people with Lupus) can be found here:
Thank you for the websites!