Thread: Now What????!!
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Old 11-20-2008, 03:57 AM   #2
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Re: Now What????!!

Murphmom, hi. In your shoes, I'd first get copies of your bloodwork, to start building your own file. In case you have to try other doctors, you'll have your old tests available (not that you have to vocalize that!).

You could borrow lupus hardcovers from your local library. Dr. Daniel Wallace does a thorough job explaining reasons for ANA being positive. One problem with ANA is that it's positive in MULTIPLE conditions---or even due to a passing virus, family tendency, or aging (that last would not apply to you!) Another possible problem: your ANA level may not be high enough to be considered significant---you could ask about that.

Next, look for the autoantibodies seen in lupus. But note that ONLY TWO are considered "specific" to lupus, while the others (at least 14 more) can appear in multiple conditions. Look at your tests to see if you were tested for ALL such autoantibodies.

Review the ACR criteria. To be Dx'ed with SYSTEMIC lupus, you generally have to meet 4 (or more) over time, meaning not necessarily all at once; and there are some variants for which you may meet fewer than 4. Do any of the other criteria ring bells with you? For example, certain skin rashes can be useful to a Dx.

The criteria can take quite awhile to evolve, and/or to "trap", meaning timing of bloodwork can make a difference. (It took me years to get answers. It gradually [duh!] dawned on me that I needed a better rheumie, so I lined up some names of big-city teaching hospital rheumies, as my "Plan B".) Plus, what can look lupus-like early on can develop characteristics that point to another condition, or even to one of the "fuzzier" Dx'es, like UCTD.

On your "standard" bloodwork, check to see if any of those values are off.

You could ask your dr. in what conditions low complement levels are seen.

Doctors won't (and really shouldn't) make a call too early, without sufficient supporting evidence. If your symptoms persist, or new problems emerge, you'll have to try again, either with this rheumie or with a new one, which isn't what you want to hear. Obviously I'm only a (dumb) patient, but I truly believe reading can make you a better patient, and can help you sense whether your doctor(s) are "getting you". Post more when you can, OK? Meanwhile, sending you my best wishes, Vee