Frustration Rant!!

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New Member

Date Joined Oct 2011
Total Posts : 10
   Posted 12/21/2011 6:21 AM (GMT -6)   
I'm really at a bit of a loss right now... I'm more than done with dr.'s
I had my appointment at the lupus clinic last week, I think this is my 4/5th batch of specialists. They can say I don't have systemic lupus all my tests come back negative, I could still have a type of discoid lupus, and the lupus panniculitis I was diagnosed with a few months ago apparently is not typical.
Now, I'm not a lupus expert by any means, but isn't the one typical thing with lupus is  that it isn't typical??
I'm thankful I actually have a biopsy of the panniculitis with a differential being lupus. Otherwise I'd be up crap creek with all my negative test results.
I know we all deal with the frustartions of the Dr.'s, this has been since May, still having really no answers. I'm back on hydroxy-chloriquine as the dapsone wasn't working.
The lupus clinic actually asked me to come back in 6months because they're very interested in my case and would like to see if anyone else has figured this out. Awesome, thanks.
I try to just keep laughing it off, but really, there's going to be a breaking point soon.
Rant over, thanks

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 12/21/2011 1:08 PM (GMT -6)   
((((((((((((gentle hug)))))))))))))))
I get frustrated with my doctors too. I wish they could get together in one room with me and talk to each other and me.

Regular Member

Date Joined Feb 2007
Total Posts : 154
   Posted 12/23/2011 2:27 AM (GMT -6)   
I participated in the SF Lupus Walk in October and during the walk there were signs posted along the way that stated different facts about Lupus. One of the ones I found most interesting was:

"On average, it takes 4+ years and 3+ doctors to get a positive lupus diagnosis."

Dont give up! You will find an answer :)
Dx with SLE, Lupus Nephritis and Antiphospholipid Antibodies.
History of 2 deep vein thromboses, end-stage renal failure, pulmonary edema and shingles
Meds: prednisone, plaquenil, cellcept, warfarin, lisinopril, flexeril, oxycodone PRN, baby aspirin,
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