People diagnosed with Lupus... need help and info!?I do not wish to write a paper about all the details and symptoms, so I'll just summarize, then ask my question.
Over the last 5 years, I have had symptoms of EXTREME fatigue, joint pain, canker sores, mild hair loss, etc. I am also anemic (which no amount of iron or B vitamins changes in the slightest). In this time, I have also had a false positive Syphilis test, and chronic kidney stones (3 in 7 years).
In August of 08, I developed a cough that STILL has not gone away. I have been to TONS of doctors and been diagnosed with pneumonia, asthma, bronchitis, allergies, etc, and put on more antibiotics than I care to think of... all the antibiotic treatments actually made me feel worse.
I also developed a sudden, strange rash on my leg after being out in the sun for a couple days... which also has not gone away. And more recently, I have a light butterfly rash on my face.
Last month, I finally found a doctor that said "Wow... 8 of the 11 symptoms of Lupus... let's get you tested." I was x-rayed to check for Pleurisy (in the lung tissue), and put through about 10 blood tests (also checking for lyme disease, just in case).
Even after the false positive Syphilis, and the anemia, I tested negative on the ANA test. Kind of. I tested higher than normal, but apparently too low to make a full diagnosis of Lupus.
What does this mean exactly? Is there such a thing as borderline Lupus? And I know there are a few other diseases that mimic Lupus... but what are they? I know that Fibromyalgia is one of the "mimic" diseases, but would that also account for the blood disorders that I DO have and the rashes?
I do have another appointment with my doctor in a couple weeks, and I also know that making a Lupus diagnosis can sometimes take a while... but has anyone had the negative ANA issue and still been diagnosed with SLE? And what was your experience... anything I should ask my doctor to look for on the next visit?
Thanks!
Oh, they did also check my thyroid... everything normal there.
And should I mention, also, that my symptoms began during pregnancy and have gotten progressively worse? This has been going for about 5 years... and just now I've screamed loud enough that I am being taken seriously.
Posted by laura1corinth13
I personally do not have Lupus, but it does run in the women in my family; my mother passed away from the disease. There IS such a thing as borderline lupus my aunt was diagnosed with it, although she has no symptoms of lupus so...maybe you have something else. I am sorry I could not be of more help. I hope that find peace and relief soon.
God Bless You,
Laura
Posted by Samantha t
the higher AnA can mean inflammation meaning some sort of infection. diagnose can also go with age my mom had symptoms for years and was recently diagnosed with an autoimmune disease because a postive ANA that she never had before.
Posted by justmeinthisworld
i have heard--but can't confrin that the Lupus test is often wrong--that you can stillhave it even when the test is negative
it doesn't sound like fibro--fibro is neuro
it sounds more autoimmune
be sure tehy check your thyroid due to hair loss
Posted by Constance
Unfortunately it may take years to DX Lupus. I had all of the symptoms you do and saw a Rheumatologist for about 5 years before my ANA was positive. In the 5 years I also had a pos. Scleroderma and Sjogrens. All along my doctor said that probably I would develop Lupus buy it was a wait and see. Keep a diary of your symptoms and continue to see your doctor. Hope this helps.
Posted by Dekayel
I think there's a possibility you could have Lyme disease and co-infections. The tests for Lyme are known to be unreliable, and every symptom you describe fits with Lyme and coinfections. (Anemia can go along with basesia, a common coinfection of Lyme.) And Lyme is a spirochete, like syphilis, so maybe that figures in to your "false positive" for that as well. Elevated ANAs can also be present in Lyme.
In addition, once your immune system is trashed by something like Lyme, it makes it easy for other things like parasites, yeast, molds, and environmental toxins to move in and cause additional problems, which might also be contributing to your symptoms.
I recommend you familiarize yourself with the following websites, and also get your hands on the book "The Lyme Disease Solution."
Good sources of info about Lyme disease:
http://www.lymedisease.org
http://www.ilads.org
http://www.canlyme.com
http://www.lymenet.org
http://www.lymeinfo.net
http://www.lymediseaseassociation.org
http://www.lymedoctor.com
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