02-18-2008, 08:36 AM
Can anyone give me the magical dialogue to say to these doctors to lead them to proper tests and diagnosis? I believe strongly that i have lupus, am in the beginning of all this hodge podge, and this is my , what I would call, my 2nd flare up.
I have a positive ANA with homogenous pattern, had started with severe mouth sores this time, then very sick with flu,had severe kidney pain that landed me in the hospital(tests negative,but thought to have passed two separate kidney stones), bp uncontrollable at 200/130 for 8 days, ended up with thickening of the heart muscles, have peripheral neuropathy, pleural effusions, heaviness in my chest, joint pain, shingles(which I get every 6 months,tested).
and I had 2 years ago also..for the 1st time.. lasted about several months ... this time i just quit my job I feel so bad..
wish i cud put more but have to go to pulmonary function test and breathing test. have an appointment with the best neurologist in the area that i saw 2 yrs ago, office said he sees lupus patients but should I cancel and go to a rheumatologist?
I also am anemic, have a severe vitamin d deficiency, and low b-12.
Thank you for all ur support..
02-18-2008, 12:21 PM
Unfortunately, no matter how convinced we may be that our affliction is Lupus, your doctors are not going to give you a definitive diagnosis until they have run all tests and have eliminated all other possible causes for your symptoms. This can sometimes take months to a year before you get a final diagnosis (it took a little over a year before I was diagnosed).
The problem with diagnosis Lupus is the fact that its symptoms mimic those of so many other diseases. Lab results (such as positive ANA) can also indicate other diseases.
To make a diagnosis of Lupus, your doctors must first be assured that you are showing clinical evidence of a multi-system disease (such as abnormalities in several different organ systems). The typical symptoms or signs that might lead to SUSPICION of Lupus include:
* Skin: Butterfly rash across the cheeks; ulcers in the mouth; hair loss.
* Joints: Pain; redness, swelling.
* Kidney: Abnormal urinalysis suggesting kidney disease.
* Lining membranes: Pleurisy (inflammation of the lining of the lung); pericarditis (inflammation of the heart lining); and/or peritonitis (inflammation around the abdomen). Taken together, these types of inflammation are known as polyserositis.
* Blood: Hemolytic anemia (the red cells are destroyed by autoantibodies); leukopenia (low white blood cell count);
* thrombocytopenia (low number of platelets).
* Lungs: Infiltrates (shadowy areas seen on a chest x-ray) that come and go
* Nervous system: Convulsions (seizures); psychosis; nerve abnormalities that cause strange sensations or alter muscular control or strength.
If you have several of these symptoms, your doctor will then usually order a series of tests to examine how well your immune system is functioning. Your doctor will be looking for evidence of autoantibodies. Please be aware that there is no one test that can definitely say whether or not you have lupus, there are many laboratory tests which help your doctor to make a diagnosis.
Routine clinical tests which might suggest that you have an active systemic disease include:
* sedimentation rate (ESR) and CRP (C-reactive protein) binding, both of which are frequently elevated in inflammation from any cause
* serum protein electrophoresis which may reveal increased gammaglobulin and decreased albumin
* routine blood counts which may reveal anemia and low platelet and white cell counts
* routine chemistry panels which may reveal
* kidney involvement by increases in serum blood urea nitrogen and creatinine
* abnormalities of liver function tests
* increased muscle enzymes (such as CPK) if muscle involvement is present.
These kinds of abnormalities may alert your doctor to the presence of a systemic disease with multiple organ involvement - which could or could not be Lupus. There are many systemic diseases with multiple organ involvement and your doctors will have to, by a process of elimination, determine which one you may have.
Commonly used blood tests iused to help in the diagnosis of Lupus are:
* Anti-nuclear antibody test (ANA) to determine if autoantibodies to cell nuclei are present in the blood (many diseases have positive ANA).
* Anti-DNA antibody test to determine if there are antibodies to the genetic material in the cell
* Anti-Sm antibody test to determine if there are antibodies to Sm, which is a ribonucleoprotein found in the cell nucleus
* Serum (blood) complement test to examine the total level of a group of proteins which can be consumed in immune reactions
* Complement proteins C3 and C4 test to examine specific levels
A positive ANA test, by itself, is not proof of lupus since the test may also be positive in:
other connective tissue diseases, such as:
scleroderma, Sjogren's syndrome, rheumatoid arthritis, thyroid disease,
individuals being treated with certain drugs, including:
procainamide, hydralazine, isoniazid, chlorpromazine.
viral illnesses, such as:
other chronic infectious diseases, such as:
hepatitis, lepromatous leprosy, subacute bacterial endocarditis,
other autoimmune diseases, including:
thyroiditis, multiple sclerosis.
Because the ANA is positive in so many conditions, the results of the ANA test have to be interpreted in light of your medical history, as well as your clinical symptoms. Essentially, a positive ANA alone is never enough to diagnose lupus. On the other hand, a negative ANA does not always rule out the disease completely.
The ANA should be looked at as a screening test. If it is positive and you are feeling ill, and you exhibit the other symptoms or signs of lupus, your doctor will then want to conduct the other tests for lupus. The interpretation of all these tests takes time, and their relationship to symptoms you exhibit can be difficult. If you have many symptoms and signs of lupus and you have positive tests for lupus, only then will your doctor make a diagnosis and begin treatment. However, another frustrating aspect of Lupus is the fact that symptoms can develop slowly and they can change (symptoms you display this month may not be there next month and/or may be replaced with new and different symptoms).
Because it is so difficult to diagnose Lupus and the diagnostic process can be lengthy and arduous, many doctor will begin treating the symptoms prior to a definitive diagnosis. Perhaps you can discuss this possibility with your doctors while awaiting your diagnoses.
I hope that I've answered your question
Peace and Blessings