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Hello all. First of all I'd like to say I am new to this site so hello. But, let's get off to business. Also sorry this is kinda LONG. lol.

I am a 20 year old female who is currently wondering if I have lupus or not. To give you some background on the situation:

My father had Polymyositis, that was brought out during an injury to his lungs, and died at the age of 48 due to complications of the disease. (scarring of the lungs and CHF)

Once the family Dr. saw that his cousin had lupus and he had a type of myositis he decided it was a good idea to get us all tested. Everyone in the family was negative but me. I had a positive ANA that was 1:320 Speckled and Protein in the urine. (+1) At this time I was age 12 and immediately diagnosed with lupus. I had some stiffness in the joints and a bit of red cheeks as the only other sign. I was a fairly active child who played some sports and rode bikes all the time.

I was sent to a kidney Dr. (Not a Rhumey) and he immediately started me on Prednisone and, later, CellCept. (fairly high doeses) I gained a lot of weight and was kinda confused to what all this was. In the meanwhile, my dad died with his disease when I was 14. My ANA went down to 1:160 but I still had the protein in my urine. Because of this the kidney Dr. wanted to start me on Cyclosplorine which, is a hell of a drug. My mom decided to get a second opinion at this time. (keep in mind the only tests at this time I had where a few 24 hour urine tests, ANA and RNA. RNA was negative)

We went to loyola and La Rabita and saw two different child rhuemys who both said I don't have lupus, that I just carried the gene or antibody or whatever. They said the protein in my urine could be because I was developing and playing sports. They also did many more blood tests then the other Drs. did and said it was all negative including Lupus anticoagulants and some others. Needless to say I was happy and kinda pissed (cause the prednisone made me gain soooo much weight and ruined my ability to exercise and also gave me GERD) and was weined off the drugs.

A few months after not being on drugs (I wanna say 6 or so) I was tested and my ANA was NEGATIVE and no more protein in the urine. Something that never happened on the drugs and I was being tested every month. The only thing strange was my WBC and RBC and Hemocrit was low a few points but, it wasn't of concern and could have been due to getting off the drugs.

That was when I was 15 or 16. Now I am 20 years old and have been having really bad joint pain and fatigue, also chest pain. I have also just felt weak and icky since November of 2010. Because of this I went to a Rhumey and he did some tests and also agreed it wasn't lupus and not to worry I was ok. Just to exercise. Not satisfied with that, I had my new family Dr. run some tests. These are what he ran:

-CBC with Diff. (all normal)
-Sed Rate ESR (Normal)
-Complete Medobolic Panel (all Normal)
-T3, T4, TSH (All Normal)
-Cortisol (Normal)
-Urine Dip stick test (Normal)
-Tissue Transglamerase IgA(Normal)
-DS/DNA Antibody (Normal)
-SSA/SSB Antibody (Normal)
-ENA Screen with Reflex AB ID (normal)
-Tissue Transgalmerase AB IgG (Normal)
-30 Day Heart Monitor/Many EKGs/Chest CT/Brain CT/Brain MRI with contrast/Abdominal CT/Barium swallow+and Small Bowel/Gallbladder US/Abdominal US/Chest X-Ray and EEG (ALL NORMAL)

The only things that where not normal where my ANA (1:640 Diffuse) which scared me because that is the highest it has ever been and the first time the pattern was different. (usually speckled) And another test that was off and scared me was I had an elevated D-Dimer of 524 with anything above 250-300 not ok. However the CT of my chest was clear and the dr felt my legs and arms and said there where no clots there. Also obviously nothing was found in my brain. This is not the first time my D-Dimer was high. It was high 6 months before that too. But when I was younger like 15/16 they did the Lupus anticoag test and Cardiolipin and Smooth Muscle antibodies all normal.

So basically I am here in pain or feeling weak and faint all the time. (especially chest pain) Which my Dr. puts up to major anxiety, which I do have, but I get it from the pain I am in. The Dr. says after all the tests I am too young for it to be cardiac related too. (When I was 15 I had an echo and a stress test too to check for congenital issues but it was fine and I haven't had them checked since)

I know none of you are Drs. and can't really help me but what do you think? The only answers anyone can give is that I carry the lupus antibody or gene or something but don't actually have it. (hence the high ANA) And that, because of that the D-Dimer could just be naturally higher in me. But would the ANA fluctuate/get higher and change patterns if that was true? And I thought the D-Dimer was only false positive with cancer (pretty sure they would have found it with all the tests they have done), pregnancy (which I'm not) or inflammation. And Lupus would cause that inflammation....but I don't have that.

Any insight or anyone have anything similar? Is this stuff all possible and I was taking hardcore drugs as a child for no reason? Please lemme know. And SOOOO sorry this was soooo long. I just wanted it to be as accurate as possible and give you guys a detailed history to work with.:p Also sorry for any spelling mistakes...I'm not the best speller. haha.:rolleyes:

Thanks so much,
Hippie778





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