I am on the road to finding out if I have Lupus. A few years ago my Rheumatologist told me I probably had a autoimmune condition that would not present itself in lab work until my 30's. I don't have the butterfly rash and 3 years ago my labs were okay.
My symptoms are anemia, joint pain, sjogren's, raynaud's, inflammation, autonomic dysfunction, nausea, mouth sores, bruising, geographic tongue, poor wound healing, sun sensitivity, protein/blood in urine and headaches. The only rash I have is tinea versicolor..Back in 2008 I also spit up blood and the doctors didn't know why, since then I have tasted and spit blood off and on.
Most of theses symptoms I have had for years but they are starting to become worse. I know it could be any autoimmune condition if any but it had me wondering since a family member recently was diagnosed with lupus. It's just so frustrating nothing is showing up in blood work except anemia. Can anyone recommend a facility or doctor such as Cleveland Clinic or John Hopkins? I live in FL but am willing to travel.
But sjorgen's is an autoimmune disease. Many times the problems will over time be dx as lupus but just as often not There are a ton of different immune diseases all of which have symptoms. Unfortunately it can take years for a diagnosis to be made altho you are already dx with an AI condition. You might want to have an indepth discussion with your current doc about your symptoms and the meaning of same. Without any positive labs I'm not sure traveling 1000s of miles will give you a different answer.
I am in Florida, as well, and have not yet been diagnosed with Lupus either, however have been diagnosed with multiple other A/I diseases. The Rheumy thinks Lupus is there, as well, since there is kidney involvement, but my ANA continues to be negative. Keep in mind, the ANA can be negative and Lupus can still be there (in a small percentage of patients). As Reet mentioned, Mayo in Jax is good, as well as Shands in Gainesville. I have contemplated going to Shands myself to see if they can "connect" the puzzle instead of treating each symptom/disease individually, however, have not yet done so... They are a teaching hospital so maybe they run into our special cases where multiple issues are at play more so than does the local Rheumy. This is my goal for 2014. Right now, I am just too tired to think about it. :) Wishing you the best! Hugs ... Dee
I started off with Sjogren’s and wasn’t diagnosed with lupus until I was in my 20’s. My diagnosis was made based on the new criteria. Lab work doesn’t need to be positive if you have I think 6 of the other symptoms. Primary Sjogren’s is very similar to lupus. It can cause many of the things you named. The issues with your tongue in particular. I would definitely go to Mayo and let them figure it out. If you go in with preconceived notions that you have lupus they may miss what you really have so keep an open mind. There are so many immune issues that it could be many things. Best of luck to you!