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Old 06-23-2007, 09:27 PM   #1
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tropjeune HB User
Lupus.. or not?

For over a year now, I've been having major joint pains. It has lasted well over a year, over two, I think, but I can't pinpoint when it started. All I know is when I got to college I got it bad... I've always had joint/muscle) stiffness, since I was 10, I guess (I'm now 18), but it wasn't that bad. This year, the joint pain and muscle pain intensified. My hips have felt out of place, my joint pain was so severe I was unable to go to class, and my muscles so stiff I could barely walk... I was thus bed-ridden for a week, while I was attending class (terrifying for my GPA, but necessary for my well-being).

So, when I could finally haul myself out of bed, I walked to the college health center (which is as inconveniently located as possible) and had an appointment with an NP. The NP tested my blood and found high protein levels, a low wbc count, a low rbc count, low BUN levels, a positive ANA titer, and a low rheumatoid factor. She ran very few tests, in an attempt to get to the bottom of things.

I then had an appointment with a rheumatologist and the rheumatologist suggested I get another set of tests ran on me. Thus, it was back to the lab for me, and I discovered the ANA titer was now negative, my wbc count was now normal, and my rbc count was making progress (all of this without any vitamins, iron supplements, or drugs). I was already tested for lyme disease, and it came back negative. I also discovered, however, that the more conclusive blood tests say I have high levels for:


EBV CAPSID AG.AB/IGG - High
EBNA AB/IGG - High
ASO - High
Parvovirus B19 IGg antibodies - High
Anticardiolipin, IGM - High
HGB - Low

Now, I realize EBV in adolescents almost always becomes mono, thus I was told I had infectious mononucleosis upon diagnosis. However, such is very unlikely due to my hygienic practices. I don't swap saliva in anyway-- that means absolutely no kissing, no sharing utensils, no drinking from other peoples' cups, no eating from other peoples' food... no eating out unless I am sure they clean well enough at the restaurant (and I test the cleanliness of the utensils). It's a bad habit, but I thought it would be one that kept me from developing mono... I have read, though, that EBV is positive in many lupus patients (mono aside).

As for the ASO titer being high, I don't understand that either, since I am pretty sure I have not had strep throat at all. Everything about my throat, according to my PCP, suggests I am and have been completely healthy. I have seen my PCP pretty consistently since April, when I first went to the doctor after a pretty bad week.

Oh, note about my joints and muscles: they can be into tremendous pain, but they don't swell... and the area between the ulna and the humerus has been most painful to me. My feet (toes, ankles) and hands (metacarpus) have hurt the most. Most pain is in my: shoulders, elbows, ankles, toes, and fingers... my hip pain comes and goes, and it seems dislocated once in a while, leaving me to walk on a limp.

I'm extremely tired most of the time, my toes and fingers get cold from stress and cold, I have been getting on and off fevers for over two years, in conjunction to all this... I have trouble breathing.

Do all signs point to no, especially since my ANA titer was now negative?

Note: I was tested for hepatitis because there is a family history of autoimmune hepatitis.

Last edited by tropjeune; 06-23-2007 at 09:41 PM.

 
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Old 06-24-2007, 10:19 AM   #2
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Re: Lupus.. or not?

Hi -

Sorry I don't know what your lab results mean.

If you haven't already done this, I suggest you look at the sticky at the top of this thead about Lupus Symptoms to see if those sound familiar. Also look at the APS sticky.

As I've written elsewhere recently (don't know if you read any of the other posts), if you do have lupus, being out in the sunshine will very likely make you feel much worse for hours, days, or weeks. Does this sound like what has happened to you? Keep a written log of how long you're outside and how you feel in the time afterwards. To minimize the sun effects, you need to wear a broad brim hat, long sleeves (not transpartent), and slacks and a SPF 45+ sunblock. I know that would be a major bummer at your age.

Many folks with lupus become allergic to Sulfa and Sulfonamides (this is found in Celebrex), so be aware of that if any doctor puts you on Celebrex for your joint pain. My allergic reaction to Celebrex sounds a bit like what you've experienced. My pain and swelling went completely away once off of Celebrex. I've done fine on Naprosyn (take with food!).

Hope this helps...

Wishing you well - Barbara
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Old 06-25-2007, 06:21 AM   #3
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Re: Lupus.. or not?

Tropjeune, Hi. In the "sticky post" thread re: TEST RESULTS, there's a resource cited in one of the individual posts. Go there and "drill down" until you find the specific blood (etc.) tests typically run when lupus is a possibility. Have your doctors run these very specific tests?

And about these tests: results are not so straightforward! Only two of the long list of autoantibodies, etc. are considered highly diagnostic for lupus: anti-ds-DNA and anti-Sm. The others? Alas, they can be positive in *mulitple* conditions, so they are not considered definitive...

...which is another way of saying, the diagnosis of systemic lupus always goes back to that standard: the "4 of 11" ACR criteria.

Add to the above the fact that some test results wax & wane with flares and remissions. So the TIMING of tests can mean a lot for some people.

Another possible pitfall: there are variants of lupus, sometimes referred to as "subsets". You already know that "classic" SLE can present with a wide variety of symptoms and test results. Then add these additional variants, and you can see there are levls of complexity.

Personally I flew under the radar for some years---who knows how many?!---because I have a milder "subset" of SLE called SCLE. I had only torso/arm rashes, never a "malar"; and I was ANA-negative. While I had a wide variety of lupus-like things going on, with some having the potential to do real lasting damage, for years seemingly none of my suburban drs. considered that I could have lupus. The one "subset" none of them seemed to have a CLUE about was---my luck!---the very one I had.

Anyway, I hope this adds more nuance to your thinking. When all is said & done, what counts is finding a dr. who believes you and who "gets" you. I think asking good questions can help a lot... Anyway, I hope you keep reading and posting and trying. Let us know how you are faring, OK? Sending you my best wishes, sincerely, Vee

Last edited by VeeJ; 06-25-2007 at 06:22 AM. Reason: spelling

 
Old 06-25-2007, 08:07 AM   #4
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Re: Lupus.. or not?

Yes, I have had all of the Lupus-specific (and Hepatitis specific) blood tests, since autoimmune diseases run in my family. I read the criteria. I forgot to add that in before; they all came back normal...

The following came back normal: TSH, SCAB, HBSAG, HEPATITIS C AB., EBC CAPSID AG.AB/IGM, EBNA AB/IGM, EBV EARLY AG. AB, RPR, CRP, E. SEDIMENTATION RATE, ANTI-DSNA, ANTI-SM, ANTI-SM/RNP, ANTI CARDIOLIPIN IGG, ANTI CARDIOLIPIN IGA, DVVTEST, DVVCONFIRM, DVVRATIO, ANTI-BETA GLYCO IGG, ANTI-BETA GLYCO IGA, ANTI-BETA GLYCO IGM

Now, I guess it makes more sense, at least in context of whether or not I have lupus.

My rheumatologist ordered all these tests because I didn't seem to have arthritis; she was pretty sure it would be lupus...

 
Old 06-25-2007, 09:42 AM   #5
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Re: Lupus.. or not?

Tropjeune, There IS such a thing as human Parvovirus B19---and that just about exhausts my knowledge of it, unfortunately! Maybe you can find info on it, then discuss same with your dr. &/or rheumie? I hope you get some clarity soon. Best wishes, Vee

 
Old 06-26-2007, 07:36 PM   #6
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Re: Lupus.. or not?

I have to say I am newly diagnosed so cant help with the results but I do know one thing. EBV or MONO or Glandular Fever as its known here isnt just caught the ways you mentioned it can indeed be passed if you are in close proximity with a carrier and they sneeze in your direction.
I only know this as I caught it while working as a dental nurse and NEVER touched my patient who we later learned had it!!

THE SWINE! Took months to get better!

Also after having both I will say that although symptoms were similar in some sense I personally think theres a lot more to lupus than the symptoms your describe at least for me there was.

Lets hope it is just mono anyway but if youre really worried get 2nd opinuon x

 
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