View Full Version : Diagnosed 9/12 after 10months of testing

09-15-2013, 02:28 PM
Hi !
I have suffered from undiagnosed edema for the last 10 months, usually +2,+3 pitting. Also suffer from joint pain in hips, feet and knees and most recently the lower back at the pelvis. Some calf and thigh pain, but so far the top half seems ok. I was diagnosed after ANA direct and anti-DNA ds w/cascade tests were positive. That was last thurs, no doctor has spoken to me since, I have been told to wait until my rheumatology appt in jan for answers/help. Does this sound normal? Does anyone else have the symptoms?
They gave me tramadol, voltaren gel, lasix and potassium, etodolac for the month, and some new itchy cream with steroids as I have just developed itchy rash on knees backs of legs and left arm.
So far the ER and urgent care treat me like dirt and provide no actual medical interventions, the doc I have is actually an NP and she does nothing even said she wouldn't except to make referrals, a PA is the one who ordered the lab tests and then left my diagnosis of lupus on my voice mail. Is any of this normal procedure? Have I been misdiagnosed and still fall into undiagnosed catagory? I don't know anyone with lupus, I'm a nursing student and have been asking my prof who has been very understanding as I fell apart a bit after the voice mail. Advice on how to cope? Find a doc that's worth seeing in Colorado Springs? Labs I should ask for? Exercises for joint pain and edema?
Thank you for any advice!

09-15-2013, 05:40 PM
First thing I would do is call a rhumatologist as well. they soecialize in dealing with Lupus. i would call the neph back and rhumey and ask to get on the cancellation list. They usually have people cancel and that way they might be able to see you before your scheduled appointments. The neph is going to deal with your kidneys where the rhumey is going to deal with the Lupus in general.

hope this helps. Please keep us posted

09-15-2013, 09:06 PM
Thank you! I will do this first thing Monday, I have also printed out Rheum doctors in a few nearby cities to try and call monday to see if i can get in to be seen faster

09-17-2013, 07:25 PM
Good! Please let us know how it goes!