Tips for diagnosis? Pretty please?
Hello! I'm 25, and looking at being diagnosed with lupus. I haven't been able to see the doctor yet, because of a chronic lack of insurance. But
I've been dealing with a weird grab bag of conditions over the past 18 months or so. Chest pain, shortness of breath, very odd blood pressure, seizures, fainting, exhaustion (fatigue is a wildly inadequate word) and for the last six months, random and frequent rashes along with maddening "rashless" itching. I've never seen the "butterfly rash" on myself, since I don't often have access to a mirror, but I've had others tell me I had it several times. Joint pain, muscle spasms, and inflammation I've always had in plenty, because of congenital gene defect, but the other stuff is new.
Put all together (and Googled), it seems like lupus. It also seems like a thousand other things, from fibro to MS to food allergies (I'm rooting for the last one, myself.) I know how hard it can be to get a diagnosis-- I had to search for thirteen years for the reason behind my primary disability! That's not so bad, for an irrevocable non-life-threatening condition. Not so good, if I actually do have lupus.
I'm hoping that some of you kind folks who've gotten diagnosed can suggest tests or procedures that help pin this down. I have hopes of being on Medicaid soon, and should then be able to afford some testing; but I really don't have the funds to go charging down every blind alley for answers. Any advice will be deeply appreciated, whether on tests or deaing with doctors in general. Thanks so much!
Welcome to our forum. I am sorry to hear that you are suffering without the benefit of a diagnosis, medication or treatment. First, I want to tell you that testing for Lupus can be somewhat difficult because the disease affects each of us in varied ways. No two persons have the exact same symptoms. Also, there are no definitive test for diagnosing Lupus. Many of the symptoms and laboratory test results of Lupus patients are similar to those of patients with different diseases, including rheumatoid arthritis, multiple sclerosis, and various nervous system and blood disorders.
Here are some of the tests used in lupus diagnosis (for explanations of these tests, please read posts in "Newly Diagnosed", page 2).
* antinuclear antibody (ANA) panel including anti-DNA and anti-Smith antibodies, with the latter two tests generally positive in lupus alone
* characteristic skin rash or lesions
* chest X-ray showing pleuritis or pericarditis
* listening to the chest with a stethoscope to reveal heart friction rub or pleural friction rub
* urinalysis to show blood, casts, or protein in the urine
* CBC showing a decrease in some cell types
* kidney biopsy
* neurological examination
Other tests that may be used for a lupus diagnosis are:
* WBC count
* serum globulin electrophoresis
* rheumatoid factor
* protein, urine
* protein electrophoresis - serum
* mononucleosis spot test
* Coombs' test, direct
* complement component 3 (C3)
* antithyroid microsomal antibody
* antithyroglobulin antibody
* antimitochondrial antibody
* anti-smooth muscle antibody
Laboratory tests that are helpful in diagnosing Lupus include several tests for a variety of antibodies commonly elevated in Lupus patients (including antinuclear antibodies, anti-DNA antibodies, etc.). Lupus patients tend to have low numbers of red blood cells (anemia) and low numbers of certain types of white blood cells. The erythrocyte sedimentation rate (ESR), a measure of inflammation in the body, tends to be quite elevated. Samples of tissue (biopsies) from affected skin and kidneys show characteristics of the disease.
A test called the lupus erythematosus cell preparation (or LE prep) test is also performed. This test involves obtaining a sample of the patient's blood. Cells from the blood are damaged in the laboratory in order to harvest their nuclei. These damaged cells are then put together with the patient's blood serum, the liquid part of blood separated from the blood cells. Antinuclear antibodies within the patient's serum will clump together with the damaged nuclear material. A material called Wright's stain will cause these clumps to turn blue. These stained clumps are then reacted with some of the patient's white blood cells, which will essentially eat the clumps. LE cells are the white blood cells that contain the blue clumps. This test will be positive in about 70-80% of all patients with Lupus.
Lupus tests by evaluation of symptoms
The American Rheumatism Association developed a list of symptoms used to diagnose Lupus. Research supports the idea that people who have at least four of the eleven criteria (not necessarily simultaneously) are extremely likely to have Lupus. The criteria are:
* Butterfly rash
* Discoid rash
* Mouth ulcers
* Inflammation of the lining of the lungs or the lining around the heart
* Kidney damage, as noted by the presence of protein or other abnormal substances called casts in the urine
* Seizures or psychosis
* The presence of certain types of anemia and low counts of particular white blood cells
* The presence of certain immune cells, anti-DNA antibodies, or a falsely positive test for syphilis
* The presence of antinuclear antibodies.
Perhaps the above information will be helpful and informative for you when you are able to get to a doctor. I would suggest that you try to see a rheumatologist (or at least and internal medicine doctor) as they are generally more informed about Lupus than a general practioner.
Best of Luck To You
Thanks, Saysusie! I'll be sure and take this list and the notes from the other conversation when I go in. I've found having more detailed medical information makes the doctors take a patient more seriously than "just" a history of symptoms. Now I feel a bit more prepared.
If you go to a hospital with all these symptoms, they will review all these issues make you stay and they might speed up the Medicare issue (there is a way to get emergency medicare).
Hope this helps!