Jeri, Ann or anyone else who has information about this I would appreciate the help. I tried to scan the test result information to see if you could make heads or tails of these but I can't figure out how to copy them to an email or to this so I will do my best to explain what I can see.

As I understand it the first round of tests were all normal except my ANA screen was Positive. So my doctor (who by the way is at an Army clinic as my dear husband is in the military) had to try to find another test which she said is more specific to screen for lupus. I can't see anywhere anything like the titer (?) numbers you talked about. The second ANA also came out positive but this more specific test was negative. It is called the DNADS,QL and then by the DNADS, QT it says QP. Anyway the doctor called me today and said that the second test was fine and seemed to me as though she would leave it at that. My problem is I am still having very real joint pain that is NOT NORMAL. As well as other symptoms that I have previously mentioned that I am not sure if they are related or not.

SO my question is two fold. One isn't the ANA screen positive an indicator of several possible auto immune disorders? I realize it is possible to have a positive screen and be healthy by the symptoms that brought me to the doctor are still there! Also have you heard of that second test? Does it in fact rule out Lupus as my doctor seemed to suggest? While that will be a relief I am left feeling frustrated as I know something is off with my body right now.

I have a doctor appointment with her tomorrow at which I will hopefully be able to get more answers but I would like to be armed with the right questions. Any help would be appreciated. I also got a hip x-ray today that we will hopefully be able to review tomorrow although they were not sure the report would be ready in time.

OTHER TEST RESULTS FROM FIRST TEST ARE AS FOLLOWS (ALL REPORT IN NORMAL RANGE)

WBC.....5.4
RBC.....4.84
HGB.....14.1
HCT.....42.3
MCV.....87.3
MCH.....29.0


LYME AB TOTAL 0.57

MCHC....33.2
RDW.....12.1
PLATELETS 277
MPV.....7.4
NE%.....57.70
LY%.....35.2
MO%.....5.7
EO%.....1.20
BA%.....0.20
ABS:NEUTRO 3.1
ABS:LYMPHS 1.9
ABS:MONO 0.3
ABS:EOS 0.1
ABS:BASO 0.0
DIFF TEST NOT TAKEN
ESR 11

HCG.QUAL NEGATIVE

I don;t know if any of those mean anything to you. I think this was just the normal blood work up and the results for that.

THANKS SO MUCH FOR YOUR HELP!!

Jeannie

Jeannie, I am stumped, too, but I have gone to my lupus egroup for help. Perhaps they can tell us what you need to SAY to get her to LOOK FURTHER. Don't get discouraged. This may just be "round One" and WE know you aren't crazy. Hang in there- I'll forward everything I get.
Jeri

THANKS SO MUCH JERI! I HOPE TO HAVE SOME INFO TO TAKE WITH ME TOMORROW. AS I SAID BEFORE I NEVER KNEW MUCH ABOUT LUPUS BEFORE THIS. I WOULD JUST HATE TO SET IT ASIDE NOW ONLY TO FIND OUT LATER I DO HAVE IT AND MORE DAMAGE HAS BEEN DONE. IF NOT THIS THAN SOMETHING IS UP WITH ME. I HAVE HAD TWO POSITIVE ANA'S.

YOU ARE TRULY AN ANGEL!

JEANNIE

while we're wiaiting for help, I'll list the tests that my rheumatologist routinely runs each visit to monitor activity, then normal range and then any notes abt the test or mine:
(she runs all the ones you listed, plus http://www.healthboards.com/ubb/smile.gif

Ant-DNA (SLE) pos or neg (mine's always neg)

C-3 quantitative 88-201

C-4 quantitative 15-45 if ANA titer is high&this low: = possible SLE

CH50 Blood 160-400 low may =SLE

Anti-Nuclear Ab (ANA) this is a description of antibody IF present. SLE may be indicated by "positive"& "smooth/speckled"

Anti-Nuclear Ab Titer neg=under 1:160 (mine was 1:640)<this was only run once- at 1st visit>

C-Reactive Protein 0.0-0.8 hi = inflammation <this only run at 1st visit>

SS-A/Ro Autoabs EIA if detected may indicate Sjogren's or Sjogrens+SLE <this only run at 1st visit>


SS-B/La Aotoabs EIA if detected, same as above <this only run at 1st visit>


Rheumatoid Factor 0-15 (this is a test for Rheumatoid Arthritis, not necessary for dx of SLE) (mine's neg)<this only run at 1st visit>

i CAN'T FIND ANY OF THE TESTS WE'RE SEARCHING FOR IN "THE LUPUS BOOK".
You might go to: http://www.lupus.org/info/general.html
and print out
1. the tests used for dx and
2. the criteria used to diagnose the various autoimmune disorders.

If the doc believes it's Fibromyalgia or CFS (chronic fatigue syndrome)- both mimic lupus in some areas- the tests will all come back negative and the dx must be made based upon complaints and physical exam for tenderness, etc. The doctor will probably also have to rule out two other possibilities: if you are in the 5-10% of the population with positive ANA and no other symptoms (false positives) or if you are on some kind of medicine that caused Lupus (drug-induced lupus).
Still waiting for more help for you
Jeri

Jeannie,



The first test my reg. Dr. ran on me was the ANA screen...result, pos.



ANA Titer

Speckled....result, 1:1280 (normal<1:4)



He told me the positive result showed that I had some kind of connective tissue disorder (autoimmune). Then he ordered 4 more to see if he could narrow down which one.



DNA AB (DS)CRITHIDIA W/RFX

DNA (DS) CRITHIDIA, NEGATIVE



ENA AB (SM/RNP)

SMA AB,EA

RNP AB, EIA....result, Less than 16 (normal)

(16-20 is Equivocal)

(greater than 20, pos)



DNA AB (ss), (IGG)... RESULT, NEGATIVE



SCL-70 AB,EIA ... RESULT, NEG.



CENTROMERE AB... NEGATIVE



I copied these as they appeared on the report. I don't remember what AI disorders these were all for. But, the Dr. said that even though these last tests were neg., he wanted me to see a rheumatologist because the initial one, the connective tissue disorder was pos. He said that the last ones don't necessarily mean I don't have them. Anyway, he didn't doubt the first one at all, even tho the others were neg.



From looking at just these tests, an exam, and listing my symptoms, the rheumy said his opinion was that I had Rheumatoid Arthritis with a mix of Lupus. He prescribed a whole bunch of meds before even running any further tests. (I had already been dx with Raynauds recently and have had IBS & carpal tunnel for 30yrs.) He ordered a whole bunch of other tests and said they all looked good, but still stood by his first diagnosis. He said because the tests were good, I had a good chance of not getting the severe RA and that none of my organs have been affected yet.



From my experience, with your symptoms and pos ANA, I would insist on being referred to a rheumatologist. By the way, I wouldn't have gotten that first ANA test run if I hadn't subtly threatened the Dr. I hate to be negative, but in our family this has often happened where they said nothing was wrong and I had to insist that there was.....and in most cases, I was right. When my daughter was about 9yrs. old, she had stomach pain after she ate and was losing weight gradually. They insisted it was a milk allergy. I went back several more times & even brought them a stool sample without being asked. Finally, I just became a very angry mother...they ran some simple tests and found she had a parasite & even had to notify the public health dept. who did follow up visits. My only regret was that I didn't get angry sooner, so that my baby didn't have to suffer for so long. I'm not saying that I'm smarter than they are, but you know what's going on in your own body and what is normal. Unfortunately for many of us, we rationalized the pain, etc. for a long time before we went to the Dr. I blamed a lot of mine for the last 2 yrs onto menopause & a very long IBS flare. I saw a derm 4 different times for the rashes & got a different answer each time (none of them right). If it hadn't been for my fingers freezing in 10 seconds & what I thought was carpal tunnel pain spreading all the way to my elbow, I probably still wouldn't have gone to the DR.



As you can tell by this long dissertation ...don't ask me about doctors & dx's! You guys are just lucky this was a bad day for me & I'm too tired, etc. to tell you about my other stories.



Jeri, you're very lucky with the rheumy dr. you have! Too bad TN is just a little too far away.



Jeannie, be FIRM and good luck, Ann

[This message has been edited by Ann S (edited 03-07-2001).]

Man Alive, Ann! I see that I HAVE been blessed with a great doc!
Jeannie, this is the only response I've gotten so far:
ugh military docs. i go to them also. your next step would be to ask for a
referral to a off base doc (rhuemie) if you need more info i would be glad
to help. we are stationed at pope afb nc hugs shelia
http://home.talkcity.com/SpiritCir/shelia1968/index.html


jeri

Ok Maybe I am making sense of this. Ann you listed a test that is called DNA with (DS) in parantheses like the above. Maybe that is the same test and the QL and QT are just different variations on the same theme???? Not sure just wonder if that is what it is. If that is the case Jeri/Ann do you know what this test is? Ann I see its negative with you as well yet your Rheum. still thinks this is Lupus is that correct. I can't remember if this is on your list of tests or not Jeri. Just wondering if that is what we are talking about.

Either way I am gearing myself up for insisting on being referred to a Rheumatologist (sp?) as I don't feel the combination of my symptoms with the positive ANA means nothing. I think this is an indicator that something is off with me.

ANYWAY thanks SO much for your help. My doctor may get blindsided tomorrow when I come armed with a stack of papers and questions-LOL!! I will let you know how it goes!


(You are both angels!)

Jeannie M

Oops Jeri, I was a little confused. Is that your website?

Jeannie

Jeannie,

Jeri & I don't seem to be able to match up test names either, so I don't know if labs use different ways of labeling or what. The dr.'s seem to know what they are. Maybe that's why they get the big bucks, even tho we're the ones doing all the research!

In summary, from what I was told by my 1st dr. (an internal medicine man) when I asked him questions about the tests I listed above, he said that it was very possible that I could still have the AI disorders that I tested negative for. Then I asked him if it was also possible that the first test (ANA) which I had a positive on could also be unreliable, and he said NO. I then went to my rheumy with the above mentioned tests. He did an exam, listened to my symptoms, asked questions, and then made the initial dx. He prescribed a bunch of medicine and had me take a whole bunch of other tests before I left and told me he would talk to me in 2 weeks. When I came back, he said all the further tests look normal but still felt his original dx was accurate.

From my research, these AI disorders are hard to get dx. Most people have had them for a long time & their complaints to drs. are attributed to other things. So many of the symptoms for the AI disorders are similar so that it could be something besides Lupus that you have. Most of the time when I'm feeling symptoms or pain, I don't know if it's the RA or the Lupus. The meds for both seem to be the same too. The rheumy is about the best one to sort it out....all research says that you need to go to him too cause he's the only one familiar enough with all the diseases and symptoms.

For your sake, I really do hope we're all talking through our hats, and that your dr. is right, but........I wouldn't take the chance. Ann

jeannie and ann and all...
that's not my wesbite- it's shelia's one of the girls in my egroup who has lupus.
I am praying that God will guide your physician and that your physician will heed His guidance today.
I'm sorry that I didn't get any more responses to my request for info from my egroup for you. Some days there aren't a lot of people active. We vary by how much we are coping with.
Ann last post is right on-the-mark. It is NOT NORMAL for you to be experienceing what you are. Hold as firm as you can. Will they let your husband in with you? He might be able to be a strong advocate for some answers.
I had a doctor 8 yrs ago, after I had laid everything out (I thought I had heart trouble) He didn't order even one test, just told me that I was too pretty to be so fat. (I had been on 700 cal/day for a month and had swollen ankles and was about 30# off ideal weight) Needless to say, I gave into the humilation of his criminal comments and didn't see another doc for years!
We'll be praying for you, Jeannie (and for Ann and for Jeri :-) )
jeri

you ladies are awesome! just wanted to again say thanks! i am going to try to get a referral to a rheumatologist and take it from there! i will keep you posted! i can use all the help i can get, your prayers are much apreciated!

jeannie m