My doctor just informed me that I dont have SLE(which is what I was told originally), that I have stage 1.
Everything I am seeing says that there really isnt "stages" of Lupus and what I do see about stage one, its linked to SLE.
Whats the difference?
What kind of dr. told you this? I'm pretty sre you are correct. There is not "stages" of lupus. Either you have it or you don't. Now you can have mild lupus and severe. Meaning there is organ involvement.
I agree that there is no 'stages' other than with and without major organ involvement (ie, skin versus kidney.) As karajo said, it can be mild or severe.
I wonder if he has decided that you may have Mixed (or Undifferentiated) Connective Tissue Disease - these are where several autoimmune diseases show symptoms but not enough to make a clear cut diagnosis of one particular disease. These can stay level or can eventually develope into a diagnosis of one disease. It can take years of watching symptoms and labs to make that leap.
At the first visit with my rheumy, he also was leaning toward lupus, but now into year 3, symptoms and labs have not evolved into anything truly specific.....which is good. I don't want a Lupus diagnosis mainly because of the impact on insurance!
Do you have copies of your lab work? The doc has to put ICD9-ICD9CM codes on the lab sheet (diagnosis for the lab work.) I keep track of those codes and look them up each time to see what he is listing......you can find those codes on the internet. He keeps mine very general in nature.
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