I was diagnosed with seronegative SLE at a university hospital, Stanford (known for lupus research). After a year of unsuccessful treatment, I moved to Arizona, and was treated by an internist who agreed with the diagnosis. I live in a small town with 1 rheumie who has a horrible reputation. After 10 years my internist left. During that time I did have a consult with a rheumie who verified the diagnosis. During all this time I was getting sicker... increased joint pain, fevers, blood work abnormal at times but not all the time i.e. Low WBC, low RBC, amemia, hair loss, weight loss twice (in beginning 25 lbs in 7 weeks, last year almost 40 lbs in about the same time period) mouth sores, scalp sores, horrible fatigue & malaise to housebound-bed or couch, light malar rash on and off (once raised patches) whole arm swelled up, knees used to swell slightly, burning on the bottom of my feet(?), chest pain occasionally, costrochondritis. Also had bad diarrhea in beginning and got real sick with sun exposure.
Anyways, I am so frustrated as the dr. who did the consult now says I don't have lupus (he spent 40min. before, now new huge practice and after 5 min. No, and didn't remember me.) Other drs. here in AZ have said fibromyalgia and one said CFS. I originally had 6 drs. do the diagnosis, with support from 2 others. I did my own research, went to groups, to make sure and it seemed to fit. But here's the kicker. I don't have a positive ANA. All the drs. here believe you HAVE to have this. Stanford was starting to actually find in their research that the ANA test is not that accurate. So, here I am with no rheumotologist, everyone says I should have one. Have internist but not happy with him (limited with medicare). Pain Center lowering my pain meds (in a lot of pain) and says has to go down again because DEA says so (real scared). Would like to find rheumotologist in PX (2 hours away) but so discouraged and scared with so much rejection... starting to believe them, or it's just "in my head" or due to "unresolved issues" or "emotional problems" as some of my family thinks. Lack of family support really gets me doubting myself. Thank God I have a supportive husband. But after 20 yrs the lack of support and belief is wearing on us. Sorry this is so long. Pretty down. When I had no pain relief in past got so bad felt suicidal. Afraid of happening again without a rheumie. But would actually love it if found supportive one and a lupus med worked and didn't have to take pain meds. But by now have tolerance/physio dependence after 18 years. Praying I find a rheum. Closest would be 2 hours. Anyone else have seronegative lupus or have drs. try to change the original diagnosis? The lack of medical support is "killing me"!