... life. I have been seen by doctors at UNC and Duke. Since I have been in Atlanta which is three years post initiation of plaquinil and NSAIDs. Doctors now want to label me unknown autoimmune based on current blood work. I am so frustrated. I changed doctors and told the new doctor my concern that the last gave more credit to labs than how I would report my symptoms. He assured me it would be wrong to undo the diagnosis of the three original doctors. His office ran the in-depth lupus panels, they came back normal. That is the information the pa relayed to me. She told me you do not have lupus. I broke down in tears. I have come off all my sle medicines. I wrote an email to the doctor and his nurse replied with the same your bloodwork is normal why are you upset. I feel like what I experience everyday means nothing. No one hears me but labs mean everything. I thought by the lupus foundation criteria it is more symptoms than labs. Please tell me what to do next
I had 5 positive test for sle over a number of years and was told each time that it was a false positive and not to worry about it. When I was finally diagnosed I was shuffled around from dr to dr in a large hospital but i finally found one I could rely on. Because lupus labs change with the disease I say go with your symptoms.
I do not have lupus (diagnossed anyhow) but was told that bloodwork values can change as well. I am confused as to why they would take you off your meds though... as doctors, you would think they would know this of lupus or any autoimmune disease! IMO, I would find a different set of docs if you are up to it!
Any Rheumatologist worth anything knows that with autoimmune diseases, diagnosis does not come solely from blood work. It's a mixture of blood work and patient's clinical symptoms and the history and physical upon appointment. Blood values are not specific in autoimmune diseases. There is no test for RA, none for Lupus. There is a panel of tests that have to be weighed and then it's just an educated guess based on those findings and the patient's presentation.
The only positive test I've ever heard of that determines definitively that your have Lupus is a brain lesion from MRI.
With autoimmune diseases, inflammation is the largest factor in what is happening inside your body, since it is essentially eating itself, which causes inflammation. RA, ANA, Antibodies to this and that, all go up and down depending upon the state of your disease at the time of the blood draw. This does not mean you do not have Lupus.
I would get a different Rheumotologist. It may not mean much to the doctor, but the level of care we can get from our insurance depends upon a diagnosis. I do know that if you have nonspecific autoimmune disease, just try to get someone to treat your symptoms, because as you get older, your body gets more sensitive to everything and you'll eventually get a diagnosis.
At 35 I had that diagnosis. Now I'm 44 and I already have 3 autoimmune diagnosis with probably a 4th on the way.
Hope this helps.
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