Hi, I am a newbie with some good advise, I believe.
My story is alot like everyone elses. I started with s/s about 3 yrs ago when I was in nursing school. Joint pain and inflammation with horrible stiffness, wt loss, night sweats, extreme fatigue and lethargy, loss of appetite, terrible itching is leggs and arms with no rash, dizzy spells with some fainting and blackouts, kidney stones and gall stones in mass production with gall bladder removed finally and diuretics to flush out excess calcium in urine, unexplained edema in ankles and legs off and on, painful muscles and just plain decrease in ability to function. Went through ana test that was neg, rheumatoid neg...Family dr found igg and igm sky high and that I was positive for parvovirus and that s/s would go away eventually. Well 3 yrs later and I live in ky and am an lpn, went to dr because of many swollen lymph nodes...Biopsy neg for lymphoma and dr said we will watch because sed rate high and wbc's low....Thats when I said enough is enough! I couldn't take care of my pts when I was constantly blacking out....I got in my insurance book and picked an immunologist who was also board certified for internal medicine, went gave my s/s hx and med hx and then looked him staight in the eyes and said..."i want answers now, tx now, oh yeah, and I am sick and tired of being exhausted and having pneumonia every 3 months....If you are not willing to run broad spectrum tests and help me now, not watch me for a few months then please, don't waste my time, I will go elsewhere." he was very understanding and asked me what meds helped in past, I told him prednisone and ultram...He gave me a script for both and a better diuretic for the elevated ca levels in my urine. He then took 9 vials of blood and did a ua and assured me he would run every autoimmune and rheumatoid test known to man and go from there. He was looked at my biopsy and lab tests from family doc and felt no ca was correct. He called me 2 days later to advise me of protein in my urine so he was glad he put me on a different diuretic and would advise me of the blood kidney function tests when they were back. Exactly 2 days after app I woke up to the infamous butterly rash, mine is mild looks almost like a sunburn under the eys, bridge of nose and cheeks. He works out of the university of ky clinic and hospital...A good choice is a university clinic...I already have a 1 mnth f/u for all tests and he will see me every 3 mnths if all tests are okay...For symtpom management. You have to be your own advocate and listen to your body!! I know its aggrivating, but even if you go through many many drs...It's worth it because you will find one that is willing to help and not think you are crazy! Just say enough is enough!