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Regular Member

Date Joined Mar 2011
Total Posts : 474
   Posted 1/3/2012 2:40 PM (GMT -6)   
I'm just looking around.I have alot of lupus symptoms and when I was in the hospital in 2010 they had systemic lupus on my paperwork but not on the discharge papers as diagnosis they also didn't do any tests.I had three lupus tests done only one of them was a complete test with the dna and rna,anti ro etc...all of it came back negative plus the tests for other autoimmune came back negative so the rheumatologist diagnosed me with fibromyalgia.I went to the dermatologist because of a non itchy rash(it wasn't petechieae)and the diagnosis he said was hypersensitivity but it had wiry fibrosis in it.I also have a mild livedo reticularius.He told me I have lupus tendencies but don't have lupus he says its like standing at a bridge.I'm not sure I understand that meaning I think they really don't know at this point I am just tired of feeling like crap and if I do have it maybe there is some treatment its just getting the diagnosis.Heck I don't even know if it is lupus or not I have had so much medications since I had respiratory failure in 2010 although some of the symptoms started before but still I had alot of medicine before for asthmatic bronchitis also. I hope you don't mind me looking through your posts.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 1/3/2012 4:58 PM (GMT -6)   
I'd get tested again for Lupus.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 1/3/2012 5:22 PM (GMT -6)   
Check out the 11 symptoms used to diagnose lupus on the website. Lupus can be present without bloodwork. If you feel you have some of the other symptoms, revisit your rhuemy and ask for a review, or get a second opinion from another Rheumy who is well-versed in Lupus. (Not all are.)

Hope you feel better soon!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Dec 2008
Total Posts : 2386
   Posted 1/5/2012 5:37 PM (GMT -6)   
I'd definately consider a teaching hospital with a good rheumy. The reason behind teaching hospitals is because they have the new state of art technology, are more up to date with diagnoses and stuff. I'd actually be dead if it wasn't for a teaching hospital here in my area. I have actually been labeled as the "walking medical mystery". Trust me, if they are finding things on me, they will on you :)
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

Regular Member

Date Joined Mar 2011
Total Posts : 474
   Posted 3/4/2012 10:30 PM (GMT -6)   
I had another test done and they are still sticking with its not lupus but my neuro informed me he wants a lumbar puncture because I have a white matter lesion and he wants to test the spinal fluid...he didn't say for what,maybe ms...who knows..could be so many things.Lyme,ms,lupus,sarcoid or residual from my critical illness polyneuropathy/myopathy I had in 2010.
treacheal stenosis,fibromyalgia,panic disorder,ptsd and who knows what else
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