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So as far as the anti-Smih and anti-dsDNA, only a minority of patients with lupus have positive results of those. dsDNA correlates well with kidney involvement in lupus and anti-Smith is very specific to lupus, but is only present in about 15-20% of cases. Rheums like to see higher titers of ANA, but with all your symptoms, a positive is a positive and counts regardless of level. That is why more than one ANA is helpful, as it can be low + one time and high + another. Your anemia should be a specific type, such as iron deficiency, anemia of chronic disease, low Vit B12 or folate, hemolytic, etc. It is essential to sort that out and treat accordingly, as correcting the anemia will help immensely with your fatigue. A hematologist should be consulted if your regular Dr. can't or won't figure that out. Your platelets may be low, causing the bruising, common in lupus as well. You can also get a biopsy of facial rash by a derm, but it MUST include immunofluorescent studies on the specimen for it to be of ANY help. With that, a diagnosis of lupus can be established sometimes. I hear your frustration and "sick of being sick" is quite understandable after this long and no one willing to take a stand. If you are too weak or sick to advocate for yourself, try to take a supportive family member, spouse or friend with you to help engage in the fight to get you the needed help. Please let us know how this goes, and I hope you end up with a fantastic, knowledgeable Dr.
Rant part two. Infectious disease doctor I was sent to by horrible first rheumy for possibility of staph infection (which resulted in unneeded stress, a waste of time hospital stay, insurance issues, and being humiliated by assorted medical "professionals") that turned out to just be 4 contaminated cultures, saw me last week and was the one who pointed out the swollen kidney/lymph node. In conversation agreed that she suspects an autoimmune issue and sends me to get the sonogram and culture work up I was crying about earlier. I do that, see the cardiologist who so far has been the only one of any help and wait. I bug ID doc's office all day for updates being as symptoms are abound and I just want to touch base really. She finally calls back just moments ago and tells me that all the blood work she sent me for (foreign infections only) and the sonogram all came back clear and she can't understand why I have a swollen lymph node or kidney and such a weak immune structure especially since she (this is the best part) consulted with the rheumatologist.

the one who contaminated 4 separate blood cultures and ignores positive anti-cardiolipins and beta2's, saying they are too low for her to consider. Disregards a positive ANA on three separate occasions with a speckled pattern, and refuses to treat any of the myriad of criteria met and was told to ignore me (the ID doctors own words) if I try to sell her on this lupus idea. But she wants to biopsy the lymph node. Is that a joke? I launched into a "with all due respect doctor" type speech informing her about what my primary and cardiologist say, about everything I've learned about lupus and how it manifests, that if she agree's there's something amiss with my immune system on a built in level how could she possibly dismiss the notion of lupus just because the doctor that sent me to her in the first place with fouled up blood cultures and misinformation has set herself a higher standard than some when it comes to diagnosing a sort of catch all disease. After a brief moment of silence she said and I quote "well it's not my area of expertise, so...." and I was abruptly transferred to her receptionist who tried to confirm an appointment for the end of the month. I asked if she was kidding and hung up. Needless to say the frustration is peaking at the moment. I honestly don't understand what the problem is. I don't necessarily need the title but for the love of god could someone just treat the symptoms already. This is madness. Am I dealing with a couple of teens playing telephone or what?!

I pray the next rheumy is at least willing to address the symptoms even if they never say the word lupus, just an iota of real relief would be nice.

/end rant. Sorry for being such a big baby.





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