New lab results and I'm confused

I went to the rheumy today. I think I need to change my signature here. She is still saying she won't rule out lupus, but she thinks something else is going on. However, previous rheumy's said lupus was the most likely call. I don't know what to say I have...non-specific autoimmune disease with lupus-like symptoms???

Anyway, I got my bloodwork back from early spring. (I only see the rheumy every 3 months.) This was the first time in three years I had a negative ANA! So I guess that means, things are getting better? If so, then why do I still feel so bad?

My rheumatoid factor was the lowest it's ever been, too: 7.1.

But my sed rate is 69 (normal range 0-20) and C-Reactive Protein is 23.9 (normal range 0.0-4.9). She said that we've got to find out what's causing these high numbers.

Because of my frequent mouth sores, she wants me to see an ENT for a mouth and nose lining biopsy (ouch!) and to rule out vasculitis. She also said she's suspicious of something called Behcet's syndrome. I don't think I've seen that one on any of the lists here.

She seemed to indicate that she thinks it coudl be something vascular or bone-related since the ANA is negative now. She talked about having a bone scan. I also have to have an MRI on the knee I injured last fall, because the bursitis just isn't going away.

I was the last patient of the day, and now I just feel confused. I just want to know what's wrong with me.

Hi Kari,

A negative ANA, especially when you've had positive ANAs in the past, really doesn't mean a whole heck of a lot.  ANA is a very crude measurement, and as such, cannot even be used to monitor disease activity (any of the ANA related diseases, not just lupus).  With your elevated SED rate and ESR, though, something for sure is going on.  It sounds like your rheumy has a handle on it.  It's been my experience that AI disease can be very ambiguous for the first several years that it starts, and it is very difficult to put a specific diagnostic label on it.  My rheumy reminded me at one point that I should spend less time worrying about a diagnosis, and concentrate more on feeling better.  In other words--go with how you feel because that is probably a better indicator of what's going on than any stupid lab value.

I hope you feel better soon.  Has your rheumy put you on plaquenil yet?

Elcamino

I have had a lot of mixed results in the past and even now with my kidney tests although I've been told definitely kidney disease. It took years for my ANAs to be constant and elevated. Same for the false positive syphillis test. They said borderline lupus 10 years ago and looked for everything else but lupus until 2 years ago when it became more obvious/severe. My SED rate and Rh factors are always negative, yet I have severe rheumatic arthritis. Apparently, my course of lupus doesn't make sense to my doctors and my doctors don't make sense to me. Fortunately, it seems that you have a competent and caring doctor, which is a blessing. Probably a good idea to rule out other possibilites, but it sounds more like lupus (vasculitis can also be a manisfestation of lupus). Did they test for RNP, IgG, IgA, lupus DNA, etc.? I wish my brain was working today so I would know what the additional tests were called (?ENA's). They ran a bunch of tests on me to see what type of lupus I had. Apparently, some test can also show vasculitis, Antiphilosolipid Syndrome (APS), etc.

Some of us are odd lupies (no rash and either neuro or vascular problems initially). Hard to believe it gets odder, but we may not fit the experts criteria and pattern for some time. It seems like a big puzzle where all the pieces have to fit perfectly. It can be a very frustrating experience when you don't fit the profile for years to come. Okay concentrate on getting better, most definitely. I finally came to the conclusion that whether or not they found the reason for my illness, I was still in need of treatment and needed to get better. Aside from not getting my prednisone and cellcept yet, I am pretty much receiving the best medicine I can get for my symptoms. The only concern for you and for others like me, is that they need to treat the entire disease faster and better...and not just treat the symptoms. Right now I know what it can do and want to slow the sucker down as much as possible. Still not sure if the other medications will do that, just hoping so. Best advice I can say is keep going and look for the best doctors available to you. I hope you don't have wonder for long - Take care - Kristin

Thanks for all your kind replies. This autoimmune stuff is just plain weird, isn't it? It doesn't sound like anyone fits into any clear pattern or diagnosis, consistently.

My doctor is a real sweetheart...she's very easy to talk to, and we always end up chatting about all sorts of things. But that's not necessarily a good thing if it distracts me from the questions I have! Seems like I never think of them all until I'm on my way home.

So, basically...the negative ANA doesn't mean anything, really?

One thing I love about this board is that you help so much when I'm frustrated. You've helped me realize that three years since my initial workup isn't really that long in trying to pinpoint a diagnosis. Just knowing that it could still be a while helps me accept this loooonnnnggg season of not knowing.

Thanks a bunch for being there!