Question on diagnosis
Ok, I have had a positive Antiphospholipid Antibody screen for 2 years. Recently that came up negative and suddenly my Lupus Anticoglutant came up positive instead. I have been diagnosed as having APS (antiphospholipid antibody syndrome) and was told I could not possible have lupus because my ANA is negative. The problem is I meet an awful lot of the criteria. Could anyone tell me am I going crazy? I have been sick for years and have been sent to the psyciatrist frequently who diagnoses anxiety caused by physical illness. The regular doctors have a fit when I am sent back with this because they want him to say I am making all this up. Even to the point of suggesting my blood work only comes up positive because I somehow mentally force it to.
DIAGNOSTIC CRITERIA FOR SLE
And Symptoms Present
1)Malar (butterfly) rash, over nose & cheeks
Occurs Frequently. Twice it has spread onto the area right between my eyebrows. I have been treated for acne with no results and was told just to live with it.
2) Discoid rash (raised, scaley, disc-shaped patch of skin
appearing after sun exposure)
Constantly. Small patch on the back of head. back is always broken out in small white lumps that cause severe itching but do not have anything in them as acne would
3) Photosensitivity (development of rash anywhere on the body or any number of systemic complaints after exposure to sunlight)
Bright red rash on face after less than 5 minutes. Severely ill and huge increase in joint pain after 20 minutes, even with 40 SPF sunscreen
4) Oral or nasal ulcers (usually painless)
once or twice a month sores in the mouth that ussually donít hurt unlessI drink soda or juice
5) Non-erosive arthritis involving 2 or more peripheral joints (non-deforming); arthralgia (stiff, painful joints without swelling)
Constant Joint Pain all over body but especially the hands, wrists, shoulders, back, hips, knees, and feet
6) Pleuritis and/or pericarditis (inflammation in tissue around lungs/heart)
had pericarditis that resulted in the need to induce labor with 3rd daughter in 1997
7) Excessive protein in the urine
Recently was spilling protien in urine but it cleared up so NO
8) Seizures; cognitive dysfunctions
9) Low white cell or low platelet count
10) LE cells ~~OR~~ anti-native DNA ~~OR~~ anti-Sm antibodies ~~OR~~ a false-positive serum test for syphilis
11) Positive ANA in high titer
Hello Roses: First of all...is your doctor a rheumatologist? Many patients may present some symptoms of Lupus with a negative ANA but with positive antiphospholipid antibodies or LUPUS anticoagulants and therefore will be diagnosed with Primary Antiphospholipid Syndrome instead of LUPUS. People with Primary APL Syndrome might still have signs and symptoms supporting the diagnosis of LUPUS (e.g - at least four of the criteria- please see earlier posts which describe these criteria).
Antiphospholipid Syndrome (also known as Hughes Syndrome and the Phospholipid Antibody Syndrome) is a disorder characterized by multiple different antibodies that are associated with clots (thrombosis) in the veins and clots in the arteries, premature miscarriages, antiphospholipid antibodies (cardiolipin or lupus anticoagulant antibodies). The antiphospholipid antibodies can also be found in the blood of individuals without any disease process. Certain drugs can cause antiphospholipid antibodies, including antibiotics, cocaine, hydralazine, procainamide and quinine.
There are three primary classes of antibodies associated with the APL syndrome: 1) anticardiolipin antibodies 2) THE LUPUS ANTICOAGULANT 3) antibodies directed against specific molecules including beta-2-glycoprotein 1. In the APL syndrome, the body's own immune system attacks the body as it would attack invading bacteria or other foreign disorders. Additionally, the APL syndrome is a condition in which the immune system produces antibodies against the body's own phospholipids (a type of fat that contains phosphorous). As a result, the body is at an increased risk of a number of problems, including blood clots, miscarriages and low platelet counts.
Patients with the APL syndrome can have a variety of antibodies to phospholipids in their blood, including a false positive syphilis test (VDRL/RPR), Lupus Anticoagulant, prolonged PTT, and cardiolipin antibody. The anticardiolipin antibody has been found in patients with SLE, which is characterized by the production of abnormal antibodies.
The APL Syndrome was first noted in patients with SLE in 1952 and in 1957, a link between recurrent pregnancy loss nd the Lupus Anticoagulant was established.
There are two main classifications the the syndrom. If the patient has an underlying autoimmune disorder (such as LUPUS), the patient is said to have secondary antiphospholipid antibody syndrome. If the patient has no known underlying autoimmune disorder, it is termed as primary antiphospholipid antibody syndrome. 30% of persons with SLE will develop the syndrome and conversely, in patients with an initial presentation of the APL syndrome, 10% will eventually go on to be diagnosed with an autoimmune disorder, such as SLE or a mixed connective tissue disorder.
LUPUS ANTICOAGULANT (LA): this is an immunoglobulin (IgG or IgM) that prolongs clotting time in vitro. The antigen for Lupus Anticoagulant probably includes a plasma protein. Lupus anticoagulants are a family of antiphospholipid-plasma antibodies, with subgroups defined as phospholipids and plasma protein.
NEGATIVE ANA: a negative ANA test DOES NOT RULE OUT SLE, but an alternative diagnoses is generally given, such as APL Syndrome!!!! Antinuclear antibody (ANA) is measured in a patient's serum by layering serum over human epithelial cells and detecting the antibody with flourescein-conjugated polyvalent anti-human immunoglobulin. It is generally elevated in patients with SLE (and other connective tissue and immune disorders). The pattern of staining of ANA can give clues as to a LUPUS diagnoses, but since the pattern also changes with serum dilution, it is not routinely reported. Only the rim pattern is highly specific for SLE and SHOULD NOT BE USED AS A SCREENING TEST FOR SLE...it SHOULD be used when there is other clinical evidence of a connective tissue disease and IT APPEARS THAT YOU DO HAVE other clinical evidence.
Patients have been diagnosed with Lupus without a positive ANA if they have presented other clinical evidence of LUPUS..However,this occurs very infrequently.
I hope that I have been helpful. You ARE NOT crazy! you seem to be presenting symptoms of an immune system disorder and you do meet many of the criteria for LUPUS!
Best of Luck to you and let me know what type of physician you are seeing
Peace and Blessings