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Thanks for your note. See my comments below... :)


[QUOTE=VeeJ;5334944]Hi & welcome. I think the best place to start is with the "sticky posts" (the permanent info posts you'll find right above the user threads). In one of them, you'll find 11 diagnostic criteria. To sustain a dx of SLE, you generally (not always) must meet 4 or more of the 11 at some point in time, meaning not necessarily simultaneously.

Next step, which your rheum is likely doing as we speak: try to ascertain how many of those 11 you may have met---and, as important, like Ladybud says, whether you've even had the right tests at the right time to prove or disprove them. What catches my attention the most:
[LIST]
[*]You said your 2012 hospitalization is for "UC/Gastritis". By UC, do you mean ulcerative colitis? Were you ever dx'ed with UC? If yes, do you take any meds for it?

Yes, my dr. conducted a Colonoscopy/Gastroscopy which yielded her diagnosis of UC and Gastritis at that time. Yes, Ulcerative Colitis. I was on Sulfasalazine for about 3 months at that time. This time, she only put me on Sulfasalazine for 1 month because I wasn't having much of a flare-up.

[*]The only ANA you list, 1:40, is barely elevated.

Yes, my other dr. didn't choose to run ANA because she said my ESR being so low (26 out of Range 0-20) wouldn't yield a positive ANA. She gave up on me. I had to ask her for a referral to another Infectious Disease Dr. It was the GI (2nd one) who finally ordered the ANA for lack of any other diagnosis when my 2nd Colonoscopy came back clear as well as my 2nd Whole Abdominal CT w/triple contrast. (I only have a small renal cyst).


[*]The only ANA subtype you list, ANCA, was negative. This is associated with vasculitis. There are others much more associated with lupus.

Yes. I know. They haven't been ordered yet.


[*]You get a LOT of infections: UTI in Aug 2014, kidney infection Sept 2014, and your last line above your labs says "lots of bacteria". Also, the last urinalysis you cite also mentions casts, RBC, and WBC.

Yes. I've been having infection after infection to the point that dr's (I've seen 13 of them so far) just look at me and shake their heads and say I've had too many antibiotics and that something seems to be affecting my immune system. No kidney pain, and no protein showed up in last urinalysis. (I've had about 8 urinalyses over the past 4 months).


[*]You've been hammered with antibiotics, to the point of testing positive for the C. difficile antigen. Also, as we women know, antibiotics themselves can unfortunately cause additional infections, like yeast.


Yes, 'tis true. :)


[*]What was the "pelvic abcess" found on 9/16: was it diverticulitis, a GI perforation, or what? Did the doctors correlate it to your continuing right-side abdominal pain? Is your "right-sided abdominal pain" anywhere in the region of your appendix?


OB diagnosed it initially as pelvic abscess. It doubled in size in one weak and was causing me to shake, tremble, have higher fevers, etc. She later decided that since the Klindex got rid of it (all the pus came out 5 days into the Klindex treatment), that it may have been a corpus luteum cyst instead. I'd had a delayed menses that time and was also hospitalized during that month.


[/LIST]

I'm only a patient but I really don't see many, or too strong, lupus pointers in what you know so far, so Ladybud's comment about further lupus-oriented* tests being needed makes total sense to me, too. (*As the 11 criteria suggest, there is no single test for lupus. Also, its lab signs are on/off, so diagnostically it's very challenging.)


:0) I know. I have had no skin manifestations other than the tiny hives that pop up randomly on my feet/ankles/arms. They are extremely itchy. At first I related them to UC, but since UC is not active at this time, I guess they relate to whatever is causing all my other symptoms.




Since so many of your episodes involve UTI's and kidneys, I also wonder at the lack of renal/bladder ultrasounds (US) and 24-hour urine collection. For example, GI conditions like UC can dehydrate you, causing urine to become too concentrated, which in turn promotes formation of kidney stones.



Dr's don't seem to think there is kidney/bladder problems so haven't ordered those tests.



If you have frequent urinary misery in addition to your known UTI's & kidney infection, I'd also wonder about the possibility of IC = Interstitial Cystitis. (IC is an autoimmune.)

Re your heart valve questions: I think mild regurgitation of heart valves is relatively common but that only a heart specialist can say how much concern is warranted when it's deemed "mild". (I'm unqualified to guess.) Same goes for your lung results (sorry).



Saw Pulmonologist on Friday. He said that since the nodules were not in the bronchial tubes/breathing airways and since I'm not coughing, that they were indicative most likely of an inflammatory process such as SLE or the like. He told me he would talk to the Rheuma and tell the Rheuma his thoughts.



I'm really sorry for all your issues and look forward to hearing more, including anything you find out during your Monday follow-up with your rheum. If you can get copies of all the lab results, you should, then feel free to post whatever catches your eye. Wishing you luck & sending warm wishes, Vee[/QUOTE]


Thanks! Appreciate it much!





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