negative blood work

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4angels2luv
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/14/2009 9:54 AM (GMT -7)   
Hi!  I have had a rash from the sun for the past 9 years, worse and worse each year, finally this year, a doctor took a biopsy and it was positive for lupus.  However, the other blood work came back negative for systemic lupus.  Starting about 11 years ago, I went on a journey to figure out what was happening to me... starting with hair loss, extreme fatigue, weight gain, swelling of the hands and feet, joint pain, (so bad it will wake me out of a dead sleep) and last few years only peeing on average 3 times a day. (I drink a ton of water a day)...... gave up and have just dealt with this on my own for about the last 8 years.  So when I tested positive for skin lupus, I figured, FINALLY! This must be an answer to it all!   My dermatologist still wants me to see a RA doc.  My question is before I go through another (EXERCISE) has anyone else ever had a negative test only to learn they did indeed have lupus?   Thanks, for any feedback!
 
Frustrated in Maryland

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/14/2009 3:00 PM (GMT -7)   
Hello, welcome to the forum! 
 
It's not uncommon at all to have negative blood work with Lupus.  UCTD (Undifferentiated Connective Tissue Disease) is the label that is used for people who don't quite meet all of the criteria for Lupus.  The fact that you have Discoid Lupus (skin) is a good reason for your doctor to pay more attention.  Definitely make your appointment with a Rheumatologist.  Take pictures of your rashes and keep a daily diary of all your symptoms, how you feel, how much you ate, sleep, everything! 
 
I hope you get the treatment you need very soon!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


gonuts
Regular Member


Date Joined Jan 2008
Total Posts : 159
   Posted 8/14/2009 6:00 PM (GMT -7)   
confused Wow, I have been wondering myself about lupus. I do have fibro and believed to have rhuemitoid arthritis, but I too have a rash on my face that I thought was my eczema coming back, which usually was on my one eye lid. Now it's been on my cheeks, by my nose and under one nostril and even going into it. I was told because it is going into the nostril that is probably isn't lupus.. I will be seeing a dermotologist in october for it... I can't wait to know one way or another.

Could you please let me know where the rash was on your face blush

Thanks for the help, Laura :-)
Cervical spine surgery 2004, C-section 1986, Cholecystectomy 1999, Thoracic and Lumbar injury 2000. Anxiety/depression 2008. Fibromyalgia 2009, Thyroidectomy 2008. Degenerative disc disease. IBS. Asthma, Rheumitoid Arthritis


SmarttyPants
New Member


Date Joined Jul 2009
Total Posts : 17
   Posted 8/14/2009 7:15 PM (GMT -7)   
I am the opposite. I have a rash (well it's not just a small red rash, its huge raised circular rash that covers both arms from shoulder to elbow). My skin biopsy came back as granuloma annular not Lupus because it didn't have scales. That is the only differnece. I have an eye lid with huge knot in it which is believed to be swollen tear duct. However my ana is positive. I'm still in limbo but I have all the fatigue, morning stiffness and all my joints are inflammed. My knees and feet are the worse. You can see every bone in foot poking out. The dermatologist swore up and down it was lupus. Lab said no scales so it's not Lupus. So I guess you can have lupus biopsy of skin and negative ana or vice versa.

SmarttyPants
New Member


Date Joined Jul 2009
Total Posts : 17
   Posted 8/14/2009 7:17 PM (GMT -7)   
I was also told alot of times the disease has to progress more to be detected in some blood tests. If disease is caught early on when symptoms just begin it's possible it has to progress farther to be diagnosed. This will explain some of the ana screening tools being positive and the other more extensive remaining negative I guess.

4angels2luv
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/15/2009 9:15 AM (GMT -7)   
Thank you all soo much for your feedback! The Rash is always on my chest, however this year it had escalated to any part of my body exposed to the sun.....didn't figure this out until we were at the beach, was under our tent the whole time, unless we were in the water. The rash went to my ear,arms, legs and back. The steroid cream works great! but it would be even better if there were something to prevent it! lol..... Thanks everyone again and God Bless!
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