Hi! New here...have a question regarding diagnosis
Hi everyone, first I'd like to say thank goodness for forums like this!
I have a question for everyone. I haven't been officially diagnosed with Lupus although my Immunlogist has now referred me to a Rheumatologist and have few of my blood tests have come back positive. I have a question regarding one of the blood tests - the anti-dna. My test came back positive however, my doctor said it was low (16). What does this test indicate? When I asked if it was possible to have a positive result and not have Lupus, his anwer was that it would be rare. However, I'm confused because my symptoms don't seem that typical for Lupus. For the last 9 months I have struggled with urticaria (over entire body) and angiodema (mostly lips/eyes/face) but have also experienced swelling in feet/ankles. I basically live on anti-histamines which have sometimes worked and when not working I resort to prednisone. I have also experienced numbness/tingling in feet/hands, arms/legs....and coldness but nothing too severe and nothing compared to the pain of the hives. I have now deduced that certain things will start a really bad flare of hives (absolutely cannot go for massages), fried foods are awful (will typically cause swelling in my face). From everything I've read, these do not seem like typical Lupus symptoms.
I am now waiting to see the Rheumatologist (appointment is scheduled for Jan 18th). I'm looking forward to seeing him because I would like to understand what is going on; on the other hand, I'm worried that I will be given a diagnosis of Lupus and that is pretty scary (no offence intended!).
I've also tested positve for ANA, and have had elevated levels of inflammation in my blood (can't remember which test that was)...and something else although I can't remember what that test was now either! UGH!
Any guidance you can provide would be greatly appreciated. Thank you all.
yes it is very common to have a positive dsana, and not have lupus.
the test is (in non medical talk), a test for inflamation.
there is a lot more to the test than just inflamation, but basically, if your body is fighting an infection or something similar, your result can and often is positive.
please do a little research to help yourself understand.
we have a seach function on this site.
type in ds ana and see what pops up.
Has your doctor sent you to get one of your urticaria lesions biopsied?
Also, when you see the rheumatologist, you may also want to ask him or her about urticarial vasculitis (more info here http://emedicine.medscape.com/article/1085087-overview). Urticarial vasculitis is an autoimmune disease, and it is sometimes associated with lupus (you can have both-- so, you could have elevated dsDNA antibodies, but your symptoms could mostly be UV. UV is characterized by urticaria, and it often includes systemic symptoms like angioedema.
When I read your symptoms, the first thing I thought of was UV, so I'd definitely encourage you to ask the rheumatologist about it. UV is a relatively rare disease (my rheumatologist, for example, has only ever seen one case), but the rheumatologist should know what it is and be able to figure out if that is what you have.
Please keep us posted!
The Following User Says Thank You to Derrie For This Useful Post:
Hi and welcome to WHL!
To answer the first part about the test results I am going to paste in a small piece from labstestonline.
What does the test result mean?
The results of an anti-dsDNA test are usually considered together with a person's medical history, signs and symptoms, and results of other autoantibody tests.
A high level of anti-dsDNA is strongly associated with SLE and is often significantly increased during or just prior to an SLE flare-up. If the anti-dsDNA is positive and the person tested has other clinical signs associated with SLE, then is it likely that she has SLE. This is especially true if an anti-Sm test is also positive.
A very low level of anti-dsDNA is considered negative but does not exclude a diagnosis of SLE. Only about 50-60% of those with SLE will have anti-dsDNA. Low to moderate levels of the autoantibody may be seen with other autoimmune disorders, such as Sjögren syndrome and mixed connective tissue disease (MCTD).
Anti-dsDNA tests are semi-quantitative and may be performed using different assays. Many laboratories use an anti-dsDNA ELISA test (enzyme-linked immunoabsorbent assay), a very reliable and sensitive test.
Please remember that it takes more than testing for a Lupus diagnosis because the tests used can be wrong (both in positive and negative form) while still having the disease.
the next part of your question is much more difficult to answer. There is no "normal" in Lupus. Yes, there are things that a majority of Lupus patients experience but Lupus affects each person differently because it depends on which part of the body it is attacking. As unfamiliar as most people, and even Dr's are, with Lupus, they are even less familiar with other AI disease. As Derrie said, it is possible you could have another AI (AutoImmune Disease) alone or in conjunction with Lupus. One of the things many of us come to learn is that once we get this lovely disease we become a hose of sorts to several others.
For now try and relax. Even if it is Lupus the good news is that there are medicines that help the vast majority of people to live long, productive lives. Either way, you are on your way to finding out what is wrong and getting it under control.
We will be here with you as you travel this road. You are now a part of the WHL family and we are glad to have you
Success is not final, failure is not fatal: it is the courage to continue that counts.
I have an extrememly high level of anti-DNA. I was told by my rhemy that this makes diagnosis of SLE much easier (since some people wait yrs for a diagnosis). They say this is one antibody that is specifically linked to Lupus. And as far as symptoms go, its my understanding that they can vary greatly between people. I say you may be lucky and they caught your Lupus early and perhaps because of this you may be able to start meds and avoid any major flares!