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Old 12-06-2009, 07:12 PM   #1
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dragonflies1998 HB User
Can't get a diagnosis

My name is Kim and I have a 15 year old daughter who got sick in September of this year. It started with cyanosis of the toes and fingers (not Reynaud's), exhaustion, and joint pain. We went to the 1st Rheumatologist who diagnosed enthesitis - without doing a proper (blood) workup. When that Rheumatologist started talking about Methotrexate, I got a 2nd opinion. The new Rheumatologist did an ANA, among other things. My daughters' ANA was positive, with a titer of 1:320, speckled pattern. At the time, she had a ESR of 40 - which has now gone down to 16. They have diagnosed her with Pain Amplification Syndrome - which makes it sound like she is faking. I am at my wits' end. I don't want a diagnosis of SLE, but all of the reading I have done seems to point to SLE....HELP!!

 
Old 12-07-2009, 05:55 AM   #2
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Re: Can't get a diagnosis

Dragonflies, I'm sorry your daughter is going thru this. Did you read the "stickies" ( = permanent information posts) at the top of the thread list?

ANA is only a threshhold test. It doesn't, by itself, diagnose anything, because it may be positive in a number of conditions, within rheumatology and other specialties, too; or even due to a passing virus... So, were *more specific* autoantibody tests run after her positive ANA? The stickies tell you more about these. Did you get copies? (Always good to keep your own file.)

In the stickies, you'll see how systemic lupus is dx'ed. People mostly (not always) need to meet at least 4 of the 11 criteria at some time, not necessarily simultaneously. Studying the criteria may give you more insight into the two rheumies she's seen, whether they ran tests that strike you as probing & appropriate, asked searching questions, etc.

I had a big "hit" at age 13: temp, pain, fatigue, elevated sed rate, depressed WBC; but I didn't get lupus-specific rashes (my only 100% specific symptom) until my 40's! I think such "early hits" are common in people who later develop certain conditions. BUT on the other hand, maybe there's enough going on to get answers NOW, with a good diagnostician. That's the huge challenge of lupus & other conditions that have overlapping symptoms: sorting one from the other is difficult & can take quite awhile. Anyway, I hope you post more after checking out the stickies & mulling over what you find. Bye for now, with best wishes to you both, sincerely, Vee

 
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Old 12-07-2009, 06:40 PM   #3
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dragonflies1998 HB User
Re: Can't get a diagnosis

I have not noticed fevers in her although she has, many times, said she feels like she has a temp - this has been on-and-off for the last several years. (I thought she was attention seeking). She also, quite often, has very red cheeks (as though they are chapped) but never a rash. Her DS-DNA was negative as was her HLA B27. The only other abnormal lab (besides sed rate and ANA) was her C3 complement - it was high. Thanks for your help with this...

 
Old 12-07-2009, 06:47 PM   #4
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Re: Can't get a diagnosis

Veej always gives such good advice. Did you see a pediatric rheumy? I expect they aren't easy to find. Do you have a university/research medical center close enough? Many of us travel great distances to see doctors who know alot about lupus (not all rheumies do). Most of a lupus dx comes from symptoms, less from blood test results. I would suggest you or your daughter start a journal of how she feels, what activities she can't do, how she is emotionally, etc. That will help make your next doc appointment more productive.

BTW....the ESR is a very unreliable test. Next time ask for a CRP...C-reactive protein.

 
Old 12-07-2009, 07:40 PM   #5
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Re: Can't get a diagnosis

Dragonflies, I read recently that increased C3 may be seen with acute inflammation, including muscle inflammation.

There are actually quite a few autoantibodies possible in lupus. Yes, the most definitive are anti-ds-DNA and anti-Sm; both are listed as diagnostic criteria, the correlation is so strong. But maybe 14 or so more are possible. For example, I'm "anti-Ro" lupus, and I think several others here are also. So, did you see *other* autoantibody tests listed, in addition to anti-ds-DNA?

Did rheumie #2 give her anything for her ongoing pain? Did he plan repeat tests? I think some autoantibodies rise & fall with flares, while others remain more constant, thus repeat testing may be needed to trap an autoantibody that fluctuates.

I agree with Heidi that not all rheumies are good at lupus! My breakthru was with big-city rheumie affiliated with a teaching hospital. I grew up in W. PA. If I knew then what I know now, I'd have probably looked to big cities like Pittsburgh or Cleveland. And you could contact local support groups for suggestions. Let us know how you two are doing. With my best, Vee

 
Old 12-08-2009, 09:05 PM   #6
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Re: Can't get a diagnosis

Rheum#2 hasn't prescribed meds - daughter cannot take nsaids (bleeding d/o from connective tissue d/o).

 
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