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

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KAnne1989
New Member


Date Joined Nov 2007
Total Posts : 16
   Posted 5/20/2008 5:02 AM (GMT -7)   
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...
"Whatever life brings,I've been through everything
And now I'm on my knees
Hoping
But I know I must go on
Although I hurt I must be strong
Because inside I know that many feel this way...."
- "Don't Stop Dancing" Creed
 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/20/2008 5:07 AM (GMT -7)   
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.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/20/2008 7:03 AM (GMT -7)   
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!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


tink 2
Regular Member


Date Joined Jan 2007
Total Posts : 371
   Posted 5/20/2008 11:31 AM (GMT -7)   
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.
Lupus since 2005, Fiberomyalgia since 2006,  sjogren's syndrome since 2005,  diabetes since 2006, Depression since 2004. who would not be with all of this.
 
       I just try to make it threw every day as best I can.
        God please remember I am on the diet platter.
                  So many beads so little time.....
 
                   Have a great Lupie Day Denise 

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