(No Subject)

Hi I've been all over the Internet and found this forum and I'm looking for some help. My primary doctor ordered an ANA test in February after I complained about painful joints in my fingers. I was surprised when he said he wanted to rule out lupus. I had The test and my ANA came back positive 132 homogeneous. Doctor said he was pretty sure I had lupus and referred me to a rheumatologist. The next month I came back in because I had hives all over my head, face and body, swollen feet ankles face and body with the red flushed cheeks and red down my nose. I also had a lot of little ulcers in my mouth in the lining of my cheeks and in my lower lip. My knee joints were hurting my elbow were hurting and I had headaches and was generally not feeling well. What was really scary was how swollen my feet were. I had been outside that weekend. My primary at that point said he was pretty sure I had lupus. I got into see the rheumatologist who ordered 23 labs, urine MRI of my brain, EEG, x-rays of my knees, chest and spine. Rheumy said he was starting with a diagnosis of fibromyalgia after he did the pressure point test and I hurt. I had never even considered fibromyalgia much less lupus. I started to read about lupus and the symptoms and I could identify with them. I have been dealing with the swelling, flushed face, headaches, nausea, joints pain for about four years but in reality have probably had the symptoms for 20/25 years but they wouldn't all show up at once. I've been going in and out of doctors offices with the symptoms but then they would quiet down and go away. 2 pregnancies ended in miscarriages and because I started late I didn't try anymore. Others have viewed me as being overly sensitive to my symptoms but they have truly been there it's hard to ignore the swelling, flushed face and all the fevers that would knock me down. My voice has become more and more horse through the years and raspy and I have brown spots on my cheeks that are very noticeable. Well the tests came back and my white blood cell count was high but it seems like everything else was within the norm. X-rays everything else. I called the rheumy today to see if I could come in sooner but my appointment isn't till September and his assistant reviewed the tests and said didn't have lupus because all my tests were negative, etc. During my first visit with the rheumy he placed me on a low dose 5 mg of prednisone and all my swelling has gone down and I actually feel a lot better. My question and frustration is that I don't know what's wrong with me. And even though I'm feeling better I am continuously tired I can't be in the sun because I react and if it wasn't for the prednisone I don't think I would be as well as I am right now. There are only four rheumatologists here in El Paso so getting a second opinion is difficult and I feel like I'm going to be back at square one. I would never have even thought of lupus up to about six months ago so it's not like I'm chasing this diagnosis. I always at one doctors or another and I feel like I'm going crazy because nothing shows up. The swelling is obvious, my feet become huge to the point that my skin has burst. Everything I read says this is a very difficult diagnosis to pinpoint does anyone have any suggestions. The one who has consistently seen me in and out is the primary. I would appreciate any feedback. I am 52.

Thank you Fran. I have thought of going outside of El Paso because I'm not going to have a lot of options here. I set up a second opinion with another rheumy and I can't get in till January. Very frustrating.