Lupus, Fibro, Antiphosphpolipid Antibody Syndrome and other Autoimmune ...
So Confused
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Have autoimmune diseases such as Lupus, Antiphoshpolipid Antibody Syndrome, Fibromyalgia, Reynauds, and others seemed to have stopped your life in its tracks? Do you just need an outlet? Would you like to share your story or draw on the experiences of others? This is the place for you. No negativity will be tolerated. Only support, respect, and healing found here.

Founded by rooroo41 on February 27, 2011
89 members
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So Confused

Back in 2007 I was diagnosed with Lupus of the skin. I had lost tremendous amounts of hair, my ANA and skin biopsy came back positive then and now For the past years (on lupus meds and steriods) my ANA is normal. My Rhemy is now stating I don't have lupus, but my dermatologist is stating I do. I have been diagnosed with IC of the bladder, Neuropathy, Fibro, Raynauds, Deteriorating disc disease in over half my back (which is very painful), Severe Fatigue all the time, Muscle spasms, Kidney infections and bladder infections, Pleurisy, Vertigo, Loss of vision in my left eye and retina bleeding, I still have skin lesions, hair loss like crazy, Severe sensitivity to sunlight and ultra violet light,  but my ANA is on the low normal side. My Scleroderma test came back normal and my Rheumatoid Factor is negative. I can't get any doctor to help me, or to figure out what is happening to me, and I am always ill. I am 37 and this has been going on since I was a child. The lesions started to appear when I was 18.    I was told if you have even 1 positive ANA in your life, you have Lupus and that it can follow in families. That you carry what is called the dis positional Geno, my DNA antibody fell with in normal range as well. My sisters ANA was positive a few years ago, but her dr would do nothing for her, my grandfather had all kinds of illnesses that were unexplained, but no one in my family, but me has had a diagnosis of Lupus. Some of my CBC tests showed abnormal, but I guess this is common with auto immune disorders. I have no idea what is happening to me, because I can't get an answer and no doctor will help me, or look.
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