Test results?

[michdonov]

Back in 1999, I had one grand mal seizure and was put on Tegretol.  Then in 2000, I woke up with my hearing completely gone and tinnitus in my left ear.  My hearing was restored to 40% after a week and has been that way since.  I saw a rheumatologist in early 2001 because of some abnormal test results from having my hearing checked.  I am having some trouble making sense of the results and my rheumatologist has been little to no help.  He basically said that I "may" have lupus or some other autoimmune disease and to wait five years to see if something happens.  I have no symptoms of lupus besides the hearing loss and the strange blood tests.  My ANA titer was 1:1024 homogoneous with positive DS-DNA of 1:32.  No rash or synovitis.  Diffusely elevated IgG and IgM with absent IgA.  Chromotome antibody is strongly positive.  All other blood tests are normal.  No low grade fever.  Because of these test results and the lack of symptoms, he hesitates to diagnose me with SLE.  That's when he told me to take one aspirin a day and to wait and see if something happens.  I am scared to death and check my skin every single day for rashes or skin lesions.  It has caused me to have panic attacks.  Is it at all possible that my Tegretol could have caused these levels to go up?  Are the levels dangerously high?  Does this sound like lupus?  Everything I've read about ANA levels confuses me.  I also have had 3 MRI's (all normal).  I see a new doctor in September and would like to do this right so any feedback would be helpful so I can go in with the appropriate questions.  I should let you know that I am a 25 year old female in remarkable health (except for all this) and would like to have children soon.

[Kevin Pho, MD]

Hello - thanks for asking your question.

Without examining you, it is impossible to say what you have.  

The anti-DS DNA level is faily specific for lupus.  Studies suggest that a positive level is 97% specific.  Other diseases that can raise the anti-DS DNA level include rheumatoid arthritis, Sjögren's syndrome, scleroderma, Raynaud's phenomenon, mixed connective tissue disease, discoid lupus, myositis, uveitis, juvenile arthritis, antiphospholipid antibody syndrome, Grave's disease, Alzheimer's disease, and autoimmune hepatitis.

Here are some of the symptoms of lupus that you may want to looks out for:
Unexplained nonspecific symptoms such as fever, fatigue, weight loss, or anemia.
Photosensitive rash
Arthralgia or arthritis
Raynaud's phenomenon
Serositis (inflammation of mucous membranes)
Nephritis or nephrotic syndrome (types of kidney diseases)
Neurologic symptoms such as seizures or psychosis
Alopecia (loss of hair)
Phlebitis (abnormal clotting)
Recurrent abortion

Again, I cannot say whether you have lupus or not without examining you - the presence of the anti DS-DNA suggests that it is certainly possible.  I would obtain a second rheumatology opinion.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

Bibliography:
Schur.  General symptomatology and diagnosis of systemic lupus erythematosus in adults.  UptoDate, 2003.