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So here's the long and short of it, I've been presenting symptoms of an auto immune disease for quite some time. Most recently my symptoms seem to be those of lupus but my blood work is conflicting. I have severe (officially diagnosed) fibromyalgia, my joints swell to the point of uselessness, my feet and hands change colors (the loveliest shade of purple and white), my hair is falling out, I have a distinct red rash on my face, I've lost a ton of weight, I'm exhausted and can barely dress myself let alone bathe without assistance, I have horrible chest pains and blinding migraines. I'm "sick" constantly, and my lymph nodes in my neck are swollen along with my right kidney. And don't even get me started on the joy of a constant fever. These are just the basics of what I've been dealing with for over a year, only coming together and staying constant for the last six months.

So off to the parade of doctors I go and everyone gives me a preliminary diagnosis of "it looks like lupus but we're going to wait on the blood work" After more blood has been drawn than I can keep track of I take it all to a rheumy who gives me a once over and says "yeah its lupus, but let's do more blood" so off we go and now she's taking back her initial diagnosis because my blood work doesn't meet her criteria for lupus, now that's a fair enough assessment, but from all of the reading I've been doing I'm not so sure that my symptoms match up with her new diagnosis of pericarditis. My cardiologist appointment is in the morning and I'm going for a new lab work up on weds. I'm also waiting for an appointment with another rheumy, not because I like to doctor shop but because not only is the original rather stand offish, she's taken blood from me twice in her office and both sets were contaminated. So I'm taking everything from her with a grain of salt at this point. I guess I'm looking to see if anyone else has gone through something similar and I'll put up the most recent lab info, should I continue to pursue treatment for what I believe is low grade lupus? Any advice is wholly welcomed.

ANA TITER POSITIVE 1:80, pattern homogeneous/speckled. Sed rate 9. Hemoglobin A1C was 5.9 then 6.0. Vitamin B,D,HDL,CO2,Sodium all very low (different rates on different tests but all well below normal) Anti-SM is negative. Complements c3 and c4 are each on the low end of normal.

As far as I can see, this just tells me something is going on but no idea what. I just know what my symptoms are and how drastically my life has changed for the worse. Needless to say I'm incredibly confused.
You indeed have many symptoms of lupus and pericarditis is one of the more serious symptoms/complications of lupus, so I'm not sure what all the hesitation is about. Have you had anti-dsDNA tested, or any evidence of anemia, low white cells on CBC? Any protein or blood in urine? Have you been tested for anti-phospholipid syndrome, a clotting disorder often present in lupus? I think you are smart to see a cardiologist who will want an echocardiogram, EKG, and a different rheum. If your facial rash is intermittent, I would take pictures of it when present and take pictures of the Raynaud's in fingers and feet to document fleeting symptoms. IMO, this is not a low grade case, not if pericarditis is present. You need aggressive treatment in addition to a diagnosis. With treatment, your fevers, chest pain, joint pain and swelling, fatigue, Raynaud's, and lymph nodes will all improve. I would make sure you take all your previous test results, xray reports or other imaging reports with you to your new rheum and cardiologist. Good luck. You have to be persistent to find a Dr. who will not dismiss your symptoms, labs, and drag feet on a diagnosis, and get you started on treatment sooner rather than later. If any of the above mentioned tests have not been done yet, I would ask for them to be included in Wed. labs. A new sed rate and CRP for current inflammation would be good too, and a repeat ANA if only one has been done, as they fluctuate, and a new one may be higher in titer.
Thank you both so much for your replies! It's incredibly uplifting just to know to some extent I'm on the right path and not just grasping at straws. I had a closer look at my last set of labs and looked for that list starting with anti - and beta everything. The only ones that came back positive were the three anti-cardiolipin's (igg,iga,igm) and the set of Beta2-glyco's (igg,iga,igm) all the numbers are considered low for this lab so I guess that wasn't enough for this rheumy to consider important, or maybe I'm looking at the wrong thing. After reading the sticky note I can assure you both I meet the criteria twice over, and feel even more certain this is lupus or at the very least a very close relative.

I also believe I have some kind of long lasting infection but that's just more of a "hunch" as I know my body pretty well (part of the reason it suddenly giving up on me has been so upsetting) and can tell there's something different going on. I'll definitely have someone look into the lymph nodes, and rash especially since cancer was brought up at one point. As far as the kidney goes, I've been prone to infections and stones ever since I had a sudden infection come on about six years ago, the infection almost killed me and that kidney has been damaged ever since. Its been suggested that a small stone could be blocking a duct and causing the swelling. I immediately called my doc and asked for a sonogram after complaining of kidney pain, so he squeezed me in for the morning right before the cardiologist! Just got in from buying a monster bottle of water in anticipation. I really cant thank either of you enough, you've both given me some direction just when I truly felt like the water was too deep and I couldn't see the shore anymore.





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