tired of wondering do i have it or do i not?
hi. new here. my husband thought it would be a good idea for me to talk to people who could understand what i am going through. i am having a difficult time believing whether or not i actually have lupus because my doctors have me questioning myself. in 1999 i had a sudden onset of double vision and went to eye doctor thinking it was glasses i needed. they told me i had optic neuritis in both eyes and i should be checked out by a doctor. after being tested for MS, diabetes, pseudotumor cerebri, etc and no one coming up with anything, i got frustrated and called a friend who i worked with who is a doctor and told him my frustrations. he took a thorough history and ran some bloodwork. my sed rate was 47 and i had a borderline speckled ana and was slightly anemic. he decided to diagnose me with mctd until further symptoms showed themselves. after that i had an episode of going completely blind. i forgot to tell you that my history includes fast heart rate,chest pain,unexplained raised red rashed on arms and legs and fatigue since teenager, most symptoms went away when i had my children from 1985 to 1990, they began to re-appear noticeably in 1995 and it has gone down hill from there. current symptoms are malar rash that sometimes comes and goes in a matter of hours, extreme fatigue, joint pain, high blood pressure, elvated blood glucose from steroids and possibly because i am very overweight, severe headaches, microalbuminuria in 2001, and now i am anemic and have more protein in my urine than before which was discovered this past week while i was admitted to hospital for severe headache and vomiting. protein was 198mg in 24 hr urine. md told me i probably had vasculitis and possibly lupus nephritis from flare. here is the problem. my ana and all autoimmune blood tests are negative. i have ever only had just the one borderline speckled ana and a few eleveted sed rated. i have not found a rheumy that does not make me feel like i am crazy yet please help i know this is long. any help would be appreciated