Discussions By Condition: I cannot get a diagnosis.

Undiagnosed for 14 years and counting

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Byrdberes
  • October 17, 2007
  • 04:47 AM

41 year old female. 130 pounds 5'4. Generally healthy EXCEPT:

After normal vaginal delivery of healthy son 14 years ago became very ill. I have outbreaks that do not seem to occur on a regular basis but about every 3-5 months. Symptoms: Feels like a have a raging fever but do not, elevated SED rate of at the worst of 165, negative ANA, mild anemia, low white cell count but not severe, SEVERE joint pain in extremities (pain can be a knee one day then a toe or elbow the next) no swelling or redness with joint pain, Can not seem to get warm. Many nights I have to take 3-4 scalding hot showers just to get warm. Erathema nodosum present on legs when in a bad outbreak, ONLY medications that help are mass amounts of Ibuprophen and Prednisone ( have tried a variety of other meds but none helped). When in bad outbreak seriously have considered suicide just to stop the pain and the intense feeling of being cold. Have seen Rhumatoid specialists (5 of these), Internal medicine (4 of these), Gyn, OBGYN (3), Infectious disease specialists (1), Been to Loma Linda for massive testing and can only find the elevated SED rate. HELP PLEASE! ANY ideas would be helpful! I have suffered on and off for 14 years now. If I only knew what I had I would do everything to help myself! No one seems to know anything. I have spent the last few years staying up late researching diseases ont he internet in hopes of finding SOMETHING. Thanks to anyone and everyone that has any suggestions.

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  • Lupus erythematosusA chronic inflammatory disorder of the connective tissues, lupus erythematosus appears in two forms: discoid lupus erythematosus, which affects only the skin, and systemic lupus erythematosus (SLE),which affects multiple organ systems (as well as the skin).Like rheumatoid arthritis, SLE is characterized by recurring remissions and exacerbations, which are especially common during spring and summer. SLE strikes 8 times more women than men, increasing to 15 times among women of childbearing years. It occurs worldwide, but is most prevalent among Asians and blacks. The prognosis improves with early detection and treatment, but remains poor for patients who develop cardiovascular, renal, or neurologic complications or severe bacterial infections. gender influence women have the highest prevalence in African-Americans, Hispanics, Asians, and Native Americans in the United States.. CausesThe exact cause of SLE remains a mystery, but available evidence points to interrelated immunologic, environmental, hormonal, and genetic factors. Predisposing factorsPhysical or mental stress, streptococcal or viral infections, exposure to sunlight or ultraviolet light, immunization, pregnancy, and abnormal estrogen metabolism may all affect the development of this disease in a genetically susceptible individual. SLE also may be triggered or aggravated by treatment with certain drugs — for example, procainamide, hydralazine, anticonvulsants and, less commonly, penicillins, sulfa drugs, and hormonal contraceptives. Signs and symptomsThe onset of SLE may be acute or insidious and produces no characteristic clinical pattern. However, signs and symptoms commonly include fever, weight loss, malaise, fatigue, rashes, and polyarthralgia. (joint or bone pain)Joint and skin effects In 90% of patients, joint involvement is similar to that in rheumatoid arthritis (although the arthritis of lupus is usually nonerosive). Most skin lesions are in the form of an erythematous rash in areas exposed to light. The classic butterfly rash over the nose and cheeks occurs in fewer than 50% of the patients. A scaly papular rash (which mimics psoriasis) may also develop, especially in sun-exposed areas. . Systemic effectsConstitutional signs and symptoms of SLE include aching, malaise, fatigue, low-grade or spiking fever, chills, anorexia, and weight loss. Lymph node enlargement (diffuse or local, nontender), abdominal pain, nausea, vomiting, diarrhea, and constipation may occur. Women may experience irregular menstrual periods or amenorrhea during the active phase of SLE. Because SLE usually strikes women of childbearing age, questions related to pregnancy may arise. Available evidence indicates that a woman with SLE can have a safe, successful pregnancy if she has no serious renal or neurologic impairment. Diagnostic tests for patients with SLE include a complete blood cell count with differential, which may show anemia and a decreased white blood cell (WBC) count; platelet count, which may be decreased; erythrocyte sedimentation rate, which may be elevated; and serum electrophoresis, which may show hypergammaglobulinemia
    rad-skw 1605 Replies
    • October 18, 2007
    • 10:02 AM
    • 0
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  • You definitly have something autoimmune going on. I know of people who have waited for 14 years and longer before being diagnosed. Treat your symptoms as well as you can and try reducing any stress in your daily life as much as possible. Lupus is diagnosed by having 4 or more of the 11 criterias. A positive ANA does not have to be one of them... Malar Rash Rash over the cheeksDiscoid Rash Red raised patchesPhotosensitivity Reaction to sunlight, resulting in the development of or increase in skin rashOral Ulcers Ulcers in the nose or mouth, usually painlessArthritis Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)Serositis Pleuritis or pericarditis (inflammation of the lining of the lung or heart)Renal Disorder Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)Neurologic Disorder Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effectsHematologic Disorder Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.Antinuclear Antibody Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it. Immunologic Disorder Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).
    Anonymous 42789 Replies
    • October 18, 2007
    • 09:05 PM
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