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Being Sent to Jacksonville,FL....Mayo Clinic...I need your help.

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Lupus
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Posted 5/20/2008 12:02 PM (GMT 0)
My doctor sent my referral down to Jacksonville's Mayo Clinic, and I should be finding out within the next two weeks. I'm absolutely terrified. I currently have six indicators of lupus, including antiphospholipid disorder (test coming back positive), but the rheumatologists will not diagnose me since the ANA isn't coming back positive. My doctor is not willing to let me live eight more years in the condition I'm in right now...because it's worsening by the day, and I'm not overexaggerating. Does anyone have any tips? Has anyone ever gone there? To any of the Mayo Clinic? Tell me what I can do to help them, to try to figure out what is going on....

I admit. I'm 18, going to be 19 in September, and I'm a bit scared...

Posted 5/20/2008 12:07 PM (GMT 0)
if you have rashes TAKE PICTURES!!! Document everything, write up a list of symptoms and when they started as well as how they have progressed over time. I have a neg ANA and take a good long look at my signature. All you need is a rheumy who has enough courage to disregard the diagnostic norm and go ahead w/o blood work. Simply put one who knows the ANA is not a reliable measure of lupus.
Posted 5/20/2008 2:03 PM (GMT 0)
KAnne, Diagnoses of Lupus does NOT require a positive ANA. There is a link at the end of my signature "Lupus Criteria 4 of 11". This info is provided by the Lupus Foundation. Also Google Dr. Graham Hughes. He has done huge studies on Lupus and has written books that doctors use. He shows that there are many Lupans who's ANA doesn't show positive. Some good info in Lupus Resources too. Link in my signature. Blessings!
Posted 5/20/2008 6:31 PM (GMT 0)
The Mayo here in Jacksonville is very very good alot of people go there. Let me know where you are staying at I will let you know if it is a good place to stay. I live just outside of town. do not forget sun screen. you will need it.
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