I was dx'd with Lupus 21 yr's ago. I was living in a different state at the time. I understood from that rheumatologist that I had tested positive for ANA. Now I'm living in my home state and am seeing a new rheumy. She ran test and my ANA was negative, she now says I don't have lupus. I don't understand I had many positive ANA's over the yrs. Unfortunately I tried to get old records and was told they are not available. Now she says I have Sjogren's. I do carry Ro&La However I had the lip biopsy done years ago it was negative. I do have a dry mouth and teary eyes. I don't dispute that I could have Sjogren's but not in place of Lupus! Isn't just possible I am not flaring or do you have a positive ANA at all times? New rheumy won't budge on this, even though 2 previous rheumys treated me for lupus!
When I had a auto-immune hepatitis in 2000 at a university hospital (I was at death's door) I had a positive ANA 1-2560 with a homogenous pattern. I wonder was it high because of what was going on or a clear relationship to my Lupus ?? That's the only older copy from the university hospital I have. Any Thought's on this?
Thanks for writing in. This sounds very frustrating, and you are not alone. I've been hearing from so many people over the last few years who have practically every symptom of lupus but can't get any doctor to utter the word "lupus." I'm starting to develop a conspiracy theory over this. It frustrates me on behalf of everyone who is told they don't have lupus when just 5 years ago they would have been told they definitely do.
Yes you could absolutely have both Sjogren's *and* lupus. It is very common for people with an autoimmune disease to be diagnosed with 2 or 3 or even more autoimmune diseases. I've been diagnosed with lupus (SLE), Raynaud's, Sjogren's (all 3 are autoimmune) and fibromyalgia. In my case, they call the Sjogren's "seecondary Sjogren's" which either means it was caused by the lupus or is overshadowed by the lupus (IOW the lupus is the bigger problem in my case).
No one has ever denied my having lupus, but I have definitely had to defend it every time I move and get a new set of doctors. Luckily (ha!) for me, when my lupus flares up, I get every symptom in the book and my ANA goes off the charts and my kidneys start to fail. So the same people who first came in and said to me "WHO TOLD YOU YOU HAVE LUPUS?" like I was lying to them- why would I want to lie about having lupus? - those same people then march in after the tests come back and announce to me "You have lupus," as if they discovered it themselves and are some kind of medical genius. So annoying. So, I kinda get it, how frustrating it is.
Now as to the ANA test. That has NEVER been THE "lupus test." You can have negative ANA and have lupus. You can have positive ANA and NOT have lupus. You'll see on this page from the Lupus Foundation of America (great organization by the way) that "lab tests alone cannot give a definite "yes" or "no" answer." http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.asp
So anyone who is telling you that you MUST have positive ANA to be diagnosed is misinformed or is looking for a reason to deny you the lupus diagnosis. (this is where I start feeling like a conspiracy theory buff- why would they want to deny a patient the correct diagnosis? I mean how do you get correct treatment and education if you don't know what you have? Why? I'll share my conspiracy theories on my blog rather than here. I'm just here to answer your questions and try to help.
Here's a blog post I wrote 2 years ago, comparing the 2 diseases (Sjogren's and Lupus). I just re-read it and it says everything I would say to you if we were sitting across the table chatting (or ranting).
It's my most popular blog post, and that makes me sad.
Meanwhile, Know that a lot of the treatment (immune suppressants) overlap so the treatment may not be all that different.
And also know that the alternative medicine that helps with one autoimmune disease will probably also help the other. (Check out this article from Dr Mark Hyman http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-you_b_657395.h
So, in a way, it doesn't matter a lot which disease you have if the treatment remains the same. In another way it does matter, because having a diagnosis taken away from you kind of feels like all your suffering, in their minds, never happened.
I apologize for taking so long to answer this, but I was mulling it over. This situation of doctors refusing to diagnose people with a disease they obviously have upsets me very much. I can't see any morally justifiable reason for doing that.
I hope you get the answers and help you need from a doctor who listens to and respects you.
All my best-
The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer
- Carla's book "How Can You NOT Laugh at a Time Like This?"