Should I get a 2nd opinion?

I posted before regarding my symptoms of extreme fatigue, achiness, muscle twitches, etc. that seems to come and go.  I had a positive ANA 1:320 speckled and was sent to the rheumatologist.  He said he thought it was a false positive because I didn't have any real autoimmune symptoms (rash, sun sensitivity, patchy hair loss, dry mouth/eyes, etc.)  He did some more blood work and I received a call from his nurse saying the dr. says I don't have lupus or any autoimmune disease and my labs were normal.  I just received a copy of those results.  Everything was normal EXCEPT- still positive ANA (doesn't state the ratio or pattern) and also positive smith antibodies 1.0 which the range is 0.0- 0.9, so just barely positive.  

Would you accept that it is not lupus and begin to search for another answer, or would you get a second opinion?  What else would cause a positive smith antibody and positive ana?  

[suega]

I forgot to mention that I was negative for RNP.  I was just doing some research online and it said that if you are positive for Smith you will always be positive for RNP also.  Well, I'm not!  ????

[karajo]

Hey Sue,

According to "The Lupus Book" page 28, Anti-Sm are very specific for lupus (present in 20 - 30% of Lupus patients) and are rarely observed in any other disease.  These antibodies interfere with the ability to transcribe RNA (ribonucleic acid) from DNA.  Now I don't know what RNA is.  So you might want to look that up.  

I would definitely seek out a second opinion.  Who told you all of your labs were normal?  Was it a GP or a rheumy?  

I don't know how you would go about getting a second opinion.  Most rheumys want a referal.  If it was your GP, you could call the dr. up that told you that and request that he/she refer you to a rhuemy to make sure.  If it was a rhuemy, I would ask your GP to refer you to another rhuemy.  

SPEND TIME IN THE SUN BEFORE YOU LABS!!!!!  Can't stress that enough.  If you have lupus, it will cause an inflamatory response in your body that these doctors are looking for.  

RNP is found in people with mixed connective tissue disease.  I'm not sure what your dr. means by that.  You can have just Lupus w/o having MCTD.  

YES, SECOND OPINION!  But do it reverantly.  Drs. have fragile egos.

[suega]

This came from the rheumy.  He ran a serious of blood work and everything is within normal range except the ANA and Smith.  I have a copy of the results and everything else looks good.  I didn't speak to the doctor, just the nurse.  When I called for the results she said the dr. told her to tell me I do not have lupus or any other autoimmune disease.  I was so happy to hear that, but then asked her to fax me a copy of the results and that is when I saw the positive Smith.  

My insurance does not require a referral to specialists.  As it happens, I have another appointment scheduled for another rheumy in October.  I made that appointment first and then didn't want to wait that long and got an earlier appointment with this doctor who says I don't have lupus. Since I never cancelled with the first appointment,  I think I will just keep it.  I don't think my current rheumy would ever even know since I have a copy of the labs.

I read somewhere that 90% of the time, a positive smith means you have lupus.  I cannot find anywhere any mention of what the other 10% could be.  Everything else I read just says a "false positive" is very rarely seen.  Is it "normal" that absolutely nothing else shows up on my blood work?  

[karajo]

"Is it normal that nothing else showed up on my blood work?"

Yes, it is normal.  Some of those test can flare up in organ involvement and then subside when the flare is over.  It takes a while of your body fighting what's gong on to even get a rise in the labs.  That's why most people take 10 years to get a dx.  

I think one of your question that was not addressed was, does everyone with lupus have the malar rash (butterfly rash)?  About 35% of patients with systemic or discoid lupus report a butterfly rash on their cheeks.