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i'm new and scared

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Old 08-31-2007, 04:55 PM   #1
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badbackpeg HB User
i'm new and scared

Hi everyone,

I am waiting for my lupus blood test to come back. Listen to this one. I went to see my gp dr last monday 27th, for help with some of what is going on with me,(whiich i will list below), and he was looking through my file, and he said, maybe I should test you for lupus again, your last test was positive, but it isn't always correct. I knew nothing of this.

First I will tell you I have had mono (when I was 13), I am 69 now, and 2 years ago I had pancreitis ( from a ercp procedure), and I have heard if you have had either of these it puts yoiu at risk for lupus. Has anyone else ever heard of this?

My symptoms are, itching, restless legs, rash on my back, stabbing pains in my joints and muscles. I broke my lower back 4 months ago, and it was starting to get better, then a couple weeks ago, my lower back and legs and feet are just killing me. I am using 50 mg of the duragesic patch, takes me from a pain level of 9 down to a 7. this stabbing pain is in my fingers, hands, wrists, elbows, knees, and the list goes on. If I don't have lupus something is going on, and I sure need for someone to find out what it is. I have apt with a rheumatologist on the 12th on sept, but I feel I can't handle this pain that long. I had a test for rheumatoid arthritis which came back negative. but the lupus test takes longer they said.

What does this sound like to you guys.

If I have lupus, my heart goes out to all of you.

Hugs, Peg

Last edited by badbackpeg; 08-31-2007 at 04:58 PM.

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Old 09-01-2007, 01:56 AM   #2
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Re: i'm new and scared

Greetings, Peg. I think doctors are unable to convey during a short appt. what testing for systemic lupus (SLE) really means, as it's just too complex. There's a "sticky post" (permanent post) at the top of the thread list. To be Dx'ed with SLE, you generally must fulfill at least 4 of the 11 criteria listed, but not necessarily simultaneously. You'll notice there's no single blood test for lupus. The high-level blood test, the ANA, is too "general", because it's positive in *mulitple* diseases & also sometimes due to a passing virus or to a family tendency.

And other more specific autoantibody blood tests are likewise too "general". Only *two* of a rather long list are considered definitive for SLE (anti-ds-DNA & anti-Sm), while many others are seen both in lupus & other conditions.

Further, the "4 of 11" criteria apply only to SLE, which I think of as "classic" lupus. But there are *other* kinds of lupus, generally lesser, called "subsets", in which only some (i.e., a "subset") of the test results, symptoms, etc. from SLE are likely. These subsets are (1) discoid lupus erythematosus (DLE; considered the mildest); (2) subacute cutaneous lupus erythematosus (SCLE; considered intermediate); (3) drug-induced lupus erythematosus (DILE); and (4) neo-natal lupus.

About RASHES: In a similar vein, there are multiple kinds of lupus-specific rashes, such as malar, subacute cutaneous annular, subacute cutaneous psoriasiform, discoid, tumid, etc. Mostly, lupus rashes can't be diagnosed soely on appearance; skin biopsy with additional immunofluorescent stain testing is the gold standard.

To dig deeper into these buzz words, you could try the SEARCH BOX in the upper left of the screen. (Click the "Web" option.)

I hope you post more. For instance... Did you ask for a copy of your previous bloodwork, to see what tests were ordered & results? (Look for ANA, *plus* more specific tests like anti-ss-DNA, anti-ds-DNA, anti-Ro, anti-La, anti-RNP, RF, etc.) And, what does your rash look like? Does it itch, scar, or depigment? Wax & wane? Does it correlate to sun exposure? Etc.

And what drugs have you taken recently? FYI, certain drugs are known to be culprits in DILE (the drug-induced subset). Also, DILE is more common in middle-age & older people than in youngsters. Does your pain patch carry warnings about rashes or about DILE?

Lastly, I'm glad you're seeing a rheumie. With any luck, he/she will consider ALL possibilities & not narrow you down to one & then deem you NEGATIVE & send you home. I rolled my eyes as I typed that, because those stories are too common. After an auto accident, my neighbor was thoroughly vetted for lupus, but since she actually had *myositis*, she was locked in painful limbo for a very long time. Here's hoping you can cut to the chase quickly. Looking forward to your next post, sincerely, Vee

Last edited by VeeJ; 09-01-2007 at 01:57 AM. Reason: typo

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