Finally found a new rheumy and had my first appointment last week. It was comforting to see one of the nurses from my former rheumy who retired in March whom I really liked. I felt my consultation was very thorough and I think I have found someone I will be very happy with. The most interesting news to come out of the appointment is that he isn't 100% sure he agrees with my diagnosis of lupus...he's leaning more towards fibromyalgia. So, after 6 viles of blood, I'm hoping to hear some test results soon. We're also going to back me off of my meds (prednisone, amatriptilyne, gabapentin & cellcept) and take me back to "ground zero"...happy about it in a way, but scared I am really going to pay the price for a while.
It was interesting that when I first got sick a couple of years ago, they initially treated it as fibro, then about 9 months later, decided it was lupus. I was never 100% convinced it was lupus and that's maybe why I have been in such denial? I know that fibro is no fun and games, but if this is my diagnosis, my understanding is that fibro does not usually attack major organs, which gives me so much more relief.
Anyone else been through this with different diagnosis? I'd love to hear everyone else's thoughts and share your experience if it is similar to mine.
Hoping........
The Lupus Foundation has a nice section that aids in understanding what the diagnostic tests for lupus are all about:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2242&zoneid=524
And this is helpful for understanding the diagnostic process for fibromyalgia:
http://www.mayoclinic.com/health/fibromyalgia-symptoms/AR00054
I don't have personal experience with this, though I was just speaking with a mom and her daughter yesterday who were in this situation. Her autoimmune was debilitating but as yet unclassified. I hope you get a clear diagnosis, so you can put all your energy into staying healthy!
My first rheumatologist way back when kind of went back and forth with this. At first, with positive ANA he told me probably Lupus -- when I said "what about the muscle pain" (I had pain in both joints and muscles and didn't know lupus could cause muscle pain), he said "oh, I think you are mistaken, it is really all joint pain." Then, when he did more specific labs and anti-dsDNA was negative, even though I had so many other lab tests and symptoms that pointed to lupus, he said, "no anti-dsDNA so you don't have lupus, you have fibromyalgia." When I said, what about the joint pain, he said, "oh, I think you are mistaken, it is really all muscle pain." However, he put me on prednisone anyway just to try it. And what a world of difference that made. I could bend my wrists! After a year of misdiagnosis and trying so many different medications and treatments, none of which helped and many of which made things worse, I finally had some relief. At that point he said, "well, if it were fibromyalgia, the prednisone would not have helped, certainly not that much. It is something related to lupus, but I don't want to give you that diagnosis because you will have insurance problems. So we'll keep treating it as lupus without classifying it."
When I moved some months later and had to switch rheumatologists, the new doctor said that I had both Lupus and Fibromyalgia. Which made sense, since I definitely met the diagnostic criteria for both, and I understand it is very common to have both. I had all the tender spots that they use to diagnose Fibromyalgia, along with fatigue and muscle pain. I also had positive ANA, anticardiolipin antibodies, elevated sed rate, anemia, malar rash, photosensitivity, joint pain / swelling / stiffness, livedo reticularis, raynauds, neuropathy....