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Anyone here have negative lupus tests but still have lupus?
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Anyone here have negative lupus tests but still have lupus?

I'm crushed.  Not that I want to have lupus, but I thought I finally had the answer to my symptoms of many years.

When I indoor-tan briefly (to raise my vitamin D level) I get increased facial rash and feel bad for a couple of days afterward.  Not to mention I feel tingling and paresthesias, sometimes twitching,  while tanning.   I thought for sure my lab test for sensitivity to UVB would be positive:  It wasn't.  Sigh.  None of my lupus lab tests were positive including ANA.  And I had them done after tanning for 4 minutes.  I felt nauseous and tingly after the tanning and felt sure that something would show up on the tests.

Anyone here end up having lupus despite negative lupus labs?  I know one person in our area who had negative lupus labs and had to find out she had lupus the hard way by having a major meltdown with multisystem organ failure and spending over a month in the ICU.  I don't wanna find out that way.

So please let me hear from you if you had negative lupus labs and positive lupus.  Thanks.  

Sigh,

WAF
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I exhibited symptoms and had one positive ANA, and always have a high SED rate and RF factor.  Have not had a positive ANA since.  I am on Plaquenil which doctor says keeps the results negative.  I am lucky that the lupus symptoms are mild for me but the fibromyalgia I have causes more issues.
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TrudieC,

Thanks for your input.  Sheesh - what if your blood had not been drawn the day your ANA was positive?  Then you never would have had a positive ANA!  Sometimes its the luck of the draw.

I still feel I might have Lupus just based on the skin rash I get after UVB which lasts quite a while and also the way UVB makes me feel during and after tanning.  

I guess my next step will be this summer when the sun is more intense, I'll expose myself to it, wait till my rash is in full swing, and then have some skin lesions biopsied.

That'll tell me, pretty much for sure if its lupus.   Meanwhile, I'm too scared to continue tanning indoors.

Thanks, again for your input!

WAF
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Dear Weak and Falling,

For about a year and a half I was told I "only had Fibroymyalgia" as if that weren't bad enough, because it actually is horrible, the way you feel.  And it still is for me.

Anyway, about a year and a half later I had a really bad time breathing and finally went to the ER.  At this time I worked for doctors, believe it or not, and the one on call that day sent me home saying I had pneumonia, and to stay in bed and rest for three days.

I went back to work after three days (remember I was working for a group of physicians at this time) and they all said "Oh, you look really much, much better", to which I replied, "Well I really don't feel at all much, much better."

The very next weekend I was back in the ER and thankfully another one of the doctors I worked for was on call and she took one look at me and sent me straight up to the ICU and called a thoracic (spell?) surgeon who proceeded to tell me that I needed an operation to relieve the fluids around my heart and lungs, like yesterday.

Soooooo,  that's what happened, I had a pericardial window done on me.  After I was out of the ICU and into a regular room, they sent in a great Rheumatologist and he said "Well, it's official, you have lupus, and not the "mild" type either, but the systemic one."

Like you, I didn't want this disease, but it's better to know one's enemies than not.  I do also have fibromyalgia as well, so they weren't wrong on that score.

Long, long, story, but trying to be short and informative; I had tests run over and over and nothing showed that I had lupus, no tests at all even suggested such a thing.  It's a very difficult disease to diagnose.  With me, I'd go into my new Rheumy's office feeling totally horrible, and the tests would say I was doing better.  Then other times I would go in and I'd feel half way decent, yet on the next visit I'd be told that my blood work showed that I was having a flare on my last visit.

As far as lupus and I go, I feel like it runs and hides quite a bit.  Until the pericardial window and all the tests were sky high, and some bottoming out, I'd probably never have been diagnosed.

So, try to keep in mind that I've truly found that with lupus, it can hide, and hide for quite some time.  Yet, in the meantime your body feels like you've been beaten all over with a baseball bat, well that's lupus and fibromyalgia.  Then, boom, suddenly it shows up, but never when you'd expect it too, like when you're feeling like total caca!!!

Good Luck, with your journey, I know how difficult and frustrating it all can be.  Just also keep in mind that you and you alone are the only one who knows your own body.  Nobody else has a clue.

Again, Good Luck,

Suda
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