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I underwent a ton of testing this past spring. All the blood work came back fine including ANA. The dr. told me that I most likely have the beginnings of lupus, but that was it. At the time my symptoms were rash across nose/checks (reumy thought it wasn't the malar rash but Dermatologist wouldn't say it's roscea), pleurisy, inflamation in sacrilliac joints in back, freezing hands all the time and mouth ulcers.

I now have a sore/ulcer on the septum in my nose and I'm wondering if I should go back in for the blood work again or continue to monitor things. According to the Dr. I won't get a diagnosis until I have positive blood work, which I know takes a long time for some people. I do have hashi's, I was diagnosed at the age of 10 or 11.

How long did it take everyone to get an actual diagnosis?

Thanks!
Hi conshek,

First of all, your doctor is dead wrong about waiting for the blood work to be positive. Not everyone with Lupus has the positive blood work. In fact, there are 5% of people with Lupus that NEVER have the positive blood work! Sometimes it may take us being in the hospital and extremely sick for that blood work to come back! There are Rheumatologist's out there that use other ways to diagnose people with Lupus that don't have the positive blood work. One thing they do is called a Shirmers Blot test, which checks the eye moisture. If your eyes are really dry, that is criteria for Sjogren's Syndrome (one that goes with Lupus). They can culture your ulcers (nose AND mouth) in order to see what they are from, as well they can culture your rash. Rosacea and Lupus rashes are different types of rashes. If you do have a Lupus rash, it would come back saying that it is Lupus related. And another thing they can do is just check out your symptoms! They will check your urine for "markers" for Lupus, such as protein in the urine and other things. There are MANY blood tests that can be elevated in Lupus patients, everything from Triglycerides to ANA panels. They can watch your ESR, which measures your inflammation as well as your CRP which can also measure inflammation (or infection). So- your doctor will be waiting awhile if he/she just wants the ANA, Anti-DNA, Anti-SM, etc etc etc to be positive! I would see if they can send you on to a Rheumatologist that specializes in JUST LUPUS patients. They are hard to find!! But if you have a good one, they are worth their weight!! See about getting your mouth and nose ulcers cultured too, as well as the Shirmers Blot. that can help you head in the right direction!

With me, I waited 10 years and my body has been through a living HELL because they wanted to wait for the blood work to be positive. I had the blood work positive 10 years ago, and it was ignored. So you can imagine!! I have double and blurred vision, kidney damage, neurological dysfunction etc because they wanted to "wait and see". Try and take a proactive approach to your care, and see a good Rheumatologist. The journey CAN be long.. so best to start now! Some Rheumy's are awful.. but if you get an awful one just keep on trucking to the next one and the next one etc till the right one has you :) I had to travel to England from Canada to get diagnosed.. I did what I had to before they killed me! Take care and talk to you later :)

~Angelic





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