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CarmenLuz

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 #1 
Hi, my daughter is 13 years old, for 6 month she has bad rush in her legs. She has been misdiagnosed with ring worms and eczema. Her dermatologist did ANA test and came back positive. She also has some pain in her knees and ankles. My sister has Lupus as well. I took her to a pediatrics rheumatologist and order more test. Her ANa still positive but the anti dsDNA come back negative. The rheumatologist concluded that my daughter has not have Lupus and she doesn't need to see her again, even her rush in her legs gets worse with the sun and she has the butterfly rush in her face every time she is in the sun for more than 5 minutes.
After living with my sister Lupus and seen my daughter, it is something that makes me want to get a second opinion. Any suggestions?
TXgirl

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 #2 
Welcome and I am sorry your daughter is going through so much. I do not have a Dx of lupusbut I am being treated for it. My ANA IS VERY HIGH. But my double strand DNA is negative. Does your daughter have any other symptoms? What does her dermatologist say about her rash?
CarmenLuz

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 #3 
Beside her severe rush in her legs and her butterfly rush in her face, she had have pain in her ankles and her knees.
Robinj

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 #4 
She should be avoiding the sun and using high SPF sunscreen daily. Sun increases disease activity for most lupus patients. I know that is hard to do sometimes, but sun avoidance is important. Has she been prescribed any medication?
Hope this helps.

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CarmenLuz

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 #5 
Hi Robin, yes we are avoiding Sun. I am very frustrated it because the rheumatologist stated the she has not Lupus because her anti-dsDNA was negative even though her ANA is positive and she has all the other symptoms. I am extremely worried that she is not been formally diagnosed
shutterbug

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 #6 
It doesn't hurt to get a second opinion.
Aimee5

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 #7 
I too had positive ANA, elevated Sed rate, but my other antibodies were negative. I had rashes from the sun in the exact places lupus patients get them (face,neck/hands/knees) and pleuritis, mouth ulcers, fatigue, hoarse voice, ect.  It is supposed to be diagnosed based on if you have enough critea, not just labs alone.  I seeked a second opinion and I was diagnosed with lupus. It sounds like auto-immune diseases run in your family. I would recommend seeking another M.D. b/c it should not be diagnosed based on just labs alone and there are percentage of patients that it doesn't show in the blood!  Hang in there and I hope she gets help and feels better.
CarmenLuz

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 #8 
Thank you Amee5 for your reply. I am taking her to a sencod opinion
whylupus

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 #9 
My local rheumy also relied on Ana and other antibodies! If I would've stayed with him, I'd probably be dead and that's not a joke! I have lung, liver, kidney and heart involvement! A very very red. BUtterly rash right before a flair! After being in the sun, I will void blood the following day and feel horrible! I have lots of rashes, mouth ulcers, red swollen joints, anemia, hypothyroidism, pleural effusions, pericardial effusions, hair loss, scalp rash, low WBC, platelets, livedo ret? Rash, raynauds, memory loss, pots, pneumonitis, pleural thickening, cardiac tamponade, prolonged aptt, prolonged aptt, ovarian cyst, pericarditis, mitral and tricuspid valve prolapse from imflammation, fatigue etc! I switched rheumatologist and finally on the first visit I was started on medications! After the rheumatologist reviewed my old charts and seen the cytology of one of the pleurisy effusions and pericardial effusions he diagnosed me sle lupus and the neurologist diagnosed the sjogrens!(lip biopsy)! I still to this day only tested for an Ana of 1:80 speckled and positive for three anticardiolipin phospholipids and another antigluca beta2 phospholipid (spelling). My positives are not really high! My sed rates are elevated and there is evidence like textbook with the disease activity but the antibodies for me does not stay up nor are they very high! I also for that matter do not hold the antibodies from immunizations thru out my life either! I'm an rn and everytime I got a different job they required me to repeat my immunization s. Eva use my titers were always negative as if I never have them? Immunization would make me very ill! I drive six hours to my rheumy but , he is at the number two hospital in our country for rheumatology so it's worth it! Don't give up and research to find the best in rheumatology for pediatrics! I felt stupid. It I started taking pictures of all the things that happened to my body that I could take a pic of and places them in a file to share with rheumy! I gathered my own medical records and researched all the old things that happened over the years!
I wish you and ur little daughter the best!!! I'm sorry ur going thru this!

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