Hi, this could get long so I apologize in advance but I need some advice.
A year ago I got what I think might have been a viral gastrointestinal infection (usually called the flu), the nausea went away but the fatigue, muscle weakness and pain didn't. I waited almost a month and finally went to my dr. I was tested for EVERYTHING under the sun, hepatitis, kidney functions, ana, everything. The things that were found were a low grade temp, protein and blood in my urine athough the 24 hour urine came back insignificant. I was treated for a UTI and sent home but nothing got better. Then the ANA came back positive with a speckled pattern. My doc said lupus but that she wasn't well versed in it. I should see a reumatologist. 3 months later I got a call from the office of the rheumatologist but they didn't take my insurance so I didn't go. I was feeling better and just forgot.
Then some time later I started feeling bad again. fatigue, painful joints, fevers, swelling in my feet, hands and around my eyes and a strange rash on my face and ears that got better with steroid cream. Round scaley leasions. I went in and again protein and blood in my urine.
I was prescribed neurontin for my pain, it worked and eventually I started feeling better.
Then a few weeks ago, bam. I feel SOOOO bad. Went into an urgent care clinic (docs office closed) and was given a round of prednisone which helped a lot but was told to see my regular doc. Again the urine abnormalities and fever, rash came back etc. She again did an ANA, some antibody tests and basic cbc. The only thing that was significant was a mildly positive ANA, low complement c4, negative antibody tests and rhumatod factor, normal kidney functions and everything else.
doc left a message on my phone that it wasn't lupus after all for sure but an autoimune disease of some sort. See a rhumatologist. ok. fine.
I did some research on lupus and found that I have MANY other symptoms that fit. Like a glove. I had been out in the sun before my last flare up and didn't know that could make me sick etc.
A few days later ANOTHER message from doc. NOT an autoimune disease and no rhumatologist was interested in seeing me. Huh. No recomendation. Just the facts mam sort of message.
I am so confused and tired of feeling ill. Looking back these weren't my first boughts with whatever this is... And the ONLY thing that fits is Lupus really that I know of. CFS and Fibro don't fit, no hepatitis, AIDS etc.
I have had a history since 12 of positive ANAs, neg rhumatoid factor but joint pain, been diagnosed with bipolar but the medicine only works marginally, my fingers turn colors when cold, the rash on my face and ears, sun sensitivity, joint pain without degeneration, fatigue (omg the fatigue and joint pain are the worst), unexplained swelling, protein and blood in my urine off and on that can't be explained, even a few episodes of strange chest pain when I breath in that I never saw a doctor for (I had no insurance at the time), fevers and more that I can't remember. Oh yah... some minor short term memory loss too.
I have requested my labs from them but they haven't faxed them to me yet despite asking for almost a week now (office is 30 miles away so not convenient to drive there). I'll post more when I get them though.
Does anyone have advice, input anything? I can't live this way anymore...