Lupus Support Group

I am curious to know how Doctor's make a definitive diagnosis regarding Lupus. Over the years, different Dr.'s have diagnosed me with Lupus and other Dr.'s that I've seen have said that either I have a mild case of Lupus or that I don't even have it.

I would really appreciate it if anyone can tell me what their experience with getting diagnosed with Lupus has been. Like what kinds of tests the Doctor did to diagnose you. TIA!

With love and support,

Katy

For many of us it has taken years to get the diagnoses. The problem is there isn't a way to check for lupus. The labs they do can lead the way, but it is up to the doctor to put everything together. And sometimes the lab results don't necessarily reflect how you feel.

Plus many of the autoimmune diseases seem to overlap to some degree. You have to have a good rheumy that is willing to really listen to you.

I wish I had a better answer but lupus isn't that easy to diagnose.

Alison

Post edited by: redhairali, at: 09/06/2009 11:48 PM

I think it depends on the doctor and your symptoms. Some docs it takes a while to dx with Lupus. For me I was dx with a "funny antibody" and was told when it reacts they will treat with "get this" ASPIRIN. ha ha ha. That doc needs his license revoked for that. But it is a good laugh. The second situation I was dx with Rheumatoid arthritis. However once I got my joint x-ray the bones were fine. Then I had the dx Fibro and then finally Lupus. Now I don't know if I have Fibro or not, since they changed the dx to lupus. All of my dx were by different docs. I am even being treated by another doc. I think it takes a cluster of different things plus going to the doc during the time when it is active.

PK, could the "funny antibody" be Antiphospholipid Antibody? if that was what he was referring to, aspirin is the right thing to treat it. Until you actually have a clotting episode, then you are upgraded to warfarin. It is not uncommon to have lupus and Antiphospholipid Antibody Syndrome. Both are autoimmune diseases.

Alison

I don't know what he was talking about..I was 19 at the time and didn't ask a lot of questions. I don't have that issue now so I can't say that was what he was talking about. He actually used the words "funny antibody".

I didn't have any problems with it as well until my first stroke, when I lost the ability to speak. I hope you don't have it.

Alison

Shoot I hope I don't either...When I went into the hospital last time they checked me for blood cots. I would think that the my current doc would have said something by now...no?

APS isn't a very common disease...you might bring up what was said to you, to your current doctor. It can be diagnosed by blood tests.

Alison

I have an appt next week I think. I will ask.

i was lucky that i had a bad rash that the dermi biopsied. it came back positive for lupus. she sent me to a rheumy who ran the other tests. my hubby and i were talking about this at dinner tonight...he said lupus is the dx when everything else has been ruled out. and i thought he didn't listen LOL