i'll try to make this brief:
I have been watching this site for the past month and it helped me get up to courage to have an appointment with a rheum.
when i was 15 (now 22) I complained of awful knee pain, my reg doc ran an ANA which came back positive, sent me to juvenile rhem specialist at a renown children's hospital. I had no other symptoms only bad pain. the chief of the hospital personally told me to go home and that nothing is wrong. they gave me a diagnosis of "benign joint disorder" to shut me up. other specialists like neurologists told me there is nothing wrong, the undertone was that it's all in my head.
as of 2 years ago the joint pain spread to wrists and elbows, i'm exhausted, cant get out of bed, everything feels heavy, i cant button shirts or type for long time, too tired to concentrate. in December i started having trouble breathing went to ER which said chest/lungs sounds perfect, again nothing wrong. in February i got a sore in my mouth and google led me find to lupus info, it started my research and led me to this site. i wanted to ignore it, i didnt want to go through the "nothing is wrong" fiasco again even though now i have more symptoms. yesterday i went to my doc bc i REALLY could not take a full breath of air to save my life- and bless his heart he prescribed me xanax of all things... see i have my rheum appointment in a few days and this new "in your head, anxiety" explanation for phantom symptoms makes me so... well i dont want to have lupus but i want to have something to call this thing which made me quit my job and jeopardize my 4.9 gpa because i can't get up to go to class.
by doc ran an ana months ago when i came to him thinking maybe its fibromalaygia it was 1:320, after my doc appointment yesterday i asked his office for files from when i went to juvenile rhem and that was my ana then too (1:320)! so it's not like my bloodwork makes me look sicker now- those files also said "borderline positive" for anti-smith25 & anti-RNP but "does not fill criteria for sle" so no diagnosis. i know i have more symptoms now, like morning stiffness that's crippling, sores in mouth and throat, exhaustion/fatigue, difficulty concentrating, swelling.
i just want someone here to tell me this run around is common and that even if the doc says the retched "everything looks normal" there's still a chance i will get some sort of diagnosis. my husband is wonderful but he doesn't understand why not being diagnosed is so scary to me. i just need something to explain to myself why i feel this way, and to others why ive had to sort of downsize my life and activities for the past months.
*this was soo not brief, but i really hope someone replies*
EDIT: i reread this post after to my surprise and reassurance that two wonderful members replied to me! so i fixed all the typos bc i posted this so fast (it's the third time i've written a post and never had guts to submit) lol