Lupus: Support and Survival
Common Misconceptions About Lupus
Rheumatology, the branch of Internal Medicine specializing in the treatment of such autoimmune diseases as SLE, is a relative new-comer, having only been established in 1972. Though much knowledge has been acquired and many advancements made since that time, the vast majority of our nation's physicians not trained in Rheumatology are not current on the latest research findings concerning Systemic Lupus. As a result, most of our health care professionals are ill informed, creating tragic mis-diagnosis for many lupus sufferers.
Unfortunately, many physicians erroneously believe a lupus patient MUST have the “Butterfly Rash", that Photosensitivity EXCLUSIVELY produces a skin rash, and most look ONLY for LE cells, anti-native DNA, and anti-sm antibodies .. completely ignoring a false-positive syphilis result. The most commonly over-looked lab test is that for the anti-cardiolipin antibody.
Patients with the Lupus Anticoagulant Syndrome commonly show normal or near-normal lab results in all other respects, and usually present with symptoms different from those most widely associated with the disease. Due to this phenomenon, until an individual is specifically tested for the Anticoagulant Syndrome, a lupus diagnosis remains elusive.
In addition, many physicians are unaware that normal or near-normal lab results CANNOT eliminate a lupus diagnosis in a patient with reports of extensive systemic complaints. Even fewer physicians realize that fluctuating laboratory results in a lupus patient are not necessarily in direct proportion to disease activity. It is possible for a patient with the Anticoagulant Syndrome to suffer a stroke, (or TIA) while Sedimentation Rate, blood compliments, spinal fluid, and anti-DNA may all be normal.
Individuals with SLE will, from time to time throughout the course of their disease, have ANA (Anti-Nuclear Antibodies) results ranging from very low titers to high titers, and can even have negative results in the height of illness. However, perfectly healthy individuals can have a positive ANA, so this alone cannot establish a lupus diagnosis. Because of inadequate education in SLE, many physicians will not even think to test a patient for lupus -- especially a man or child -- while others are too quick to give a lupus diagnosis without adequate findings.
It is believed by some Rheumatologists that many patients who have been diagnosed with Systemic Lupus actually have Fibromyalgia (FM) instead. While FM can be quite functionally disabling, and it shares many symptoms with SLE, FM does not cause organ damage and it is not life threatening.
While low platelet and white cell counts are listed among the diagnostic criteria, many physicians are unaware that elevated platelet and white cell counts can be indicative of "Vasculitis" .. a secondary condition which is quite common in SLE. In fact, a great majority of lupus symptoms can be traced to this vascular condition, especially in those patients with the Anticoagulant Syndrome.
Another mis-conception is that lupus patients who suffer Central Nervous System (CNS) involvement will always show the presence of anti-native DNA antibodies. While this antibody certainly leads to a definite CNS diagnosis, there remain a great many lupus patients without this antibody who display CNS involvement.
It has recently been discovered that cognitive dysfunctions can also be traced to to low levels of oxygen in the blood, especially in those in who experience such vascular disorders as migraine headaches, Raynaud's Phenomenon, and the Anticoagulant Syndrome. This is thought to be a result of restricted blood flow to the brain due to inflammation of blood vessels. While 50% of lupus patients have the anti-DNA antibody, as many as 75% report cognitive impairments.
Contact the Lupus Foundation of America or the local Chapter that serves your area for more information about lupus, or the programs and services the LFA offers including support group information and physician referral.
Lupus Foundation of America., Inc.
1300 Piccard Drive, Suite 200
Rockville, MD 20850-4303
Information gathered from :
Searching for ways to deal with the depression, the frustrations, the questions about lupus, I joined a support group online. LUPIES has been a wonderful gift. I have learned more from the information I found on the support web site from other sufferers of Lupus than I did from my doctor. Thank you fellow Lupies! With a very special thank you to Deanna!
May your days be pain free!
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