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Looking for help, support, info?

I had surgery resulting in a staph infection last Nov/Dec. Soon afterwards began having tingling, numbness in both hands and feet, and other infections. Surgeons started to question whether or not I had diabetes... so I started on the rounds of tests and here I am 7 months later and just a little stressed out!:)

Diabetes: negative
Lymes: negative
RA: negative
Thyroid ultrasound: negative
EMG: minor findings in legs and feet
ANA: 1:1280
dsDNA: negative
Running fever (99.5-101+) constantly for several weeks
Lost 10+ pounds in the last 6 weeks or so.
Very tired all the time, but not sleepy.

Now I am having more significant pain in fingers, base of thumb and wrists.

I am going to see a rheumatologist next month, but in the meantime I'm curious if anyone has any thoughts about what this could be. GP say a negative dsDNA means I don't have Lupus, and that the ANA could be a false positive? Is this considered a high number? I feel like I'm going a little crazy as the pain comes and goes sporadically and now I feel like a hypochondriac watching for any little symptom of something.
Crow, hi & welcome. I hope you get to the rheumie while you still have that "weird rash" on your back. There are various lupus-specific rashes BEYOND the best-known ones, which are the facial malar (aka butterfly) and discoid (the scarring &/or depigmenting kind). But even a dermatologist can't tell what a rash is just by looking at it. When lupus is a possibility, dermie can do a skin biopsy with immunofluorescent stain tests, to see if the rash is lupus-specific.

ANA is positive in a variety of conditions, not just lupus. And it can also be positive due to a passing virus, aging, etc. So your GP makes sense when he says elevated ANA doesn't prove lupus.

There are many autoantibodies seen in lupus, not just anti-ds-DNA, so your GP makes sense there, too. In his lupus hardcover, Dr. Daniel Wallace charts at least 16 autoantibodies, complement levels, etc. seen in lupus. In terms of how "lupus-specific" they, he rates each: excellent, good, fair or poor. Libraries & larger bookstores stock this book.

BTW, Dr. Wallace does write that he considers 1:1280 a significant ANA titer. BUT, as your GP said, it doesn't automatically equate to lupus. It must be viewed in context of the standard ACR criteria for diagnosing SLE. You may find the criteria right here on a "sticky post" (permanent info post) at the top of the thread list.

Signs your rheumie is approaching things well include: taking your lifelong medical history; reviewing recent labs & maybe calling for new ones to be done in a lab of his choice (the tests are hard to perform, so most rheumies use specialty lab); and referring you to a hand-picked dermie for a skin biopsy, if your rash looks "promising".

I hope something here helps. Let us know how you're doing, OK? Best wishes, Vee

P.S. I had a low-odds rash, neither scarring nor nondepigmenting, on my back & upper arms (finally Dx'ed as "subacute cutaneous lupus erythematosus annular form", abbreviated SCLE); also low-odds blood results (negative ANA but positive anti-Ro). I had a terrible time getting answers.
Crow, if you can take a photo of the rash to take to the Rheumatologist, it may be helpful in diagnosing. I don't know how long you may have to wait to see, so it may fade before the appointment. Better to have evidence, I say. I have lupus and fibro but no history of rash other than a reddening on my nose that comes and goes. Not typical butterfly rash described on lupus websites, but I do have occasional boil like lesions on upper trunk and scalp. Only 5 over a number of years, but they are seen sometimes in lupus. Mine are evidenced by scarring.

In the area of the ANA, mine was high and speckled as yours but not to the extreme of your number. The Rheumatologist did a vast array of tests that included some immune studies of which I was positive for IGG and IGM which was indicative of lupus, although I am not the typical lupus case. I am glad though as I am doing better overall on the lupus treatment than I was on the fibro treatment. I would try not to worry too much at this time. I think you will be relieved once you are under the care of a Rheumatologist.





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