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Old 01-24-2006, 09:18 AM   #1
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Question New to site - do these results look like Lupus?

I've been diagnosed with CFS for the past 4 years, but I'm in the process of a re-evaluation to see if we've been missing anything. My symptoms have been chronic swollen glands, fever around 100, heaches, joint pain, fatigue (must nap 2-3 hours per day), brain fog, lightheadness, thinning hair, digestive trouble...

My lab results from last week are:

positive ANA - 1:640 (has been this result for 4 years)
low white count - 3800
elevated CRP - 1.33
elevated SED rate - 27
low albumin - 3.2

My follow-up with the rheumy is 2 weeks from now, but I'd like to have an idea of what could be going on.

Any input would be appreciated!

Thanks so much,
Pam

 
Old 01-24-2006, 02:46 PM   #2
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Re: New to site - do these results look like Lupus?

Hi, Pam. I'm certainly no dr. But what seems to be missing in your list are the *additional* blood tests that look for the specific antibodies & other "stuff" seen in lupus, such as anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, complements C3, C4, CH50, antiphospholipid antibodies, etc.

In his hardcover on lupus, Dr. Daniel Wallace lists about 16 (!) things that are seen in blood tests in lupus. Some test results are SO specific that one pretty much is assumed to have lupus if one sees them (anti-ds-DNA and anti-Sm). But others have only "good" or "fair" specificity to lupus, he writes. For example, anti-Ro is seen in lupus but also in Sjogren's syndrome.

Have such additional tests been done? Do you have actual copies of your labs? It's good to keep your own copies, in case you change drs.---plus you know exactly what's being looked at.

Best wishes, Vee (Dx'ed with SCLE, the intermediate form of lupus in 2000, with negative ANA but positive anti-Ro)

 
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Old 01-24-2006, 05:43 PM   #3
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Re: New to site - do these results look like Lupus?

thanks for the quick reply... it looks like the ENA antibodies (SSA, SB, U1RNP, Sm...) are all within normal range. The DNA antibody looks OK too, it's 5. C3 & C4 are in normal range. Some of the other results aren't back yet.

I'm so confused about this because of my symptoms too. Does this mean that Chronic Fatigue Syndrome IS actually autoimmune disease? or could it still be lupus with the lab findings that I have?

thanks,
Pam

 
Old 01-25-2006, 04:01 AM   #4
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Re: New to site - do these results look like Lupus?

Dear Pam, It's been said that milder cases of SLE are much harder to Dx than cases that scream out the most widely recognized symptoms (like malar rash, positive ANA, positive anti-ds-DNA or anti-Sm, protein in urine, etc.)

Also, if you look at the sticky posts at the front of the Board, one "sticky" contains the diagnostic/classification criteria for SLE. You need 4 of the 11, at SOME TIME (not necessarily all at once) to be Dx'ed with SLE. I guess that could mean *ANY* 4, meaning aberrant bloodwork probably is not required. However, I'd bet my bottom dollar that most drs. look long & hard for bloodwork results before making the call that it's SLE... (That's just my opinion.)

The exception to the above OUGHT to be the "subsets". For these, you do not have to have "4" criteria. SCLE (subacute cutaneous LE), the intermediate one, comes to my mind first, because its more likely to have some systemic impact. In it, 70% have a positive ANA and a positive anti-Ro. In DLE (discoid lupus), only 50% have a positive ANA. But to even suspect either of these, I'm betting a dr. would look first for a recurrent RASH. (Do you ever get rashes?) I *think* it's possible to have immune deposition under the skin without having a rash, though... Have you ever had a lupus band test?

Also, blood results can fluctuate for many of the blood markers; and results can also ramp up very slowly. I had a annular (circular) nonscarring torso/upper arm rash for years. Turns out I'd had diagnosable SCLE for years (they even retested my old skin punches, some of which were over 4 years old by then). But it took years for my anti-Ro to turn positive. (Or maybe it had been positive before but I was never told? I'll never know...) The slowness of the process was maddening!

I think you should keep trying. From your list, I see things that each could probably happen in other diseases. But it's when you put them all together in one person---it really does make one think that lupus or one of its close "cousins" (e.g., MCTD or UCTD) should be considered. I hope you post again soon with updates &/or more thoughts & questions. Best wishes, and with my fingers crossed for you, Vee

Last edited by VeeJ; 01-25-2006 at 04:10 AM. Reason: syntax

 
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