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Maddy, hi and welcome. I'm sorry for your issues and for your not having answers. A lot of us---maybe most---spent time in limbo. Have you read the "sticky posts" (permanent info posts) above the user threads? The core of a lupus dx is explained in the "sticky" about criteria. Generally (but not always), you must meet 4 or more of the 11 to sustain a dx of SLE.

Re ANA. I think it counts toward meeting one criterion only when deemed high enough. Why: because ANA can elevate due to passing bacterial or viral infections---also, as you wrote about, due to a family tendency. Also, even when really high (say 1:640, 1:1280, or higher), because ANA isn't specific to any single condition, it alone can't ever diagnose anything. But all that said, do you know how high yours is?

ANA subtypes. These more specialized blood tests can be more useful than ANA because some (not all) are more specific to certain conditions, or at least "point" to one or more as candidates. Has your rheumatologist run those subtype tests? e.g., anti-ds-DNA, anti-Sm, anti-RNP, anti-Ro, anti-La, anticardiolipin, antiphospholipid, etc. But even when those are elevated, the next questions is always "By how much?" (They can be elevated but be considered "ambiguous" or "weakly positive" and thus not counted... as opposed to "positive" or "strongly positive".)

Re other symptoms. Diffuse hair loss is common in lupus. Arthralgia is a criterion. Oral ulceration is a criterion, too. CH50, C3, and C4 tend to depress in lupus, not elevate. (I don't know what elevated CH50 might point to, sorry. Think it can fluctuate somewhat, though, in the course of normal events, meaning how our immune systems ramp up then go quieter.)

Have your thyroid values been checked? Hypothyroidism can cause many of the same symptoms as milder lupus, including fatigue, diffuse hair loss, and joint pain.

re RA. This has its own set of diagnostic criteria. RF is not diagnostic, and in fact, some people remain permanently seronegative. The best test is actually anti-CCP: it's considered an excellent predictor for developing RA.

I haven't heard of Erythromelelgia. (I shall look up.)

Do you have copies of basic labs, meaning CBC and metabolic panel? Sometimes there are clues (but not proof) there. And is urinalysis run regularly to check kidney filtering?

The "sticky posts" also contain excellent reading resources available in most libraries. I found one hardcover extremely helpful. (Didn't read the whole book, only pertinent parts). The most useful chapter, for me, was one discussing how lupus is distinguished from "close cousins". Also the skin chapter (but I had photosensitive rashes for years.) Hope you post more soon. Meanwhile, sending best wishes!

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