I believe that I have lupus, but was dismissed by my rheumatologist, and advised that I have fibromyalgia, myositis, pseudotumor cerebri, heinoch schonolein purpura (HSP), pelvic inflammatory disease, acid reflux, 3 non obstructing kidney stones, severe epilepsy, IBS, chronic fatigue, hearing loss, painful bladder syndrome, high blood pressure, chronic kidney infection syndrome, and almost every day I have gross hematuria in my urine, but have been advised every time I do a urine sample that if its not gross, it's microscopic. Along with that they also determine that I have bacteria in my urine but it will not grow in cultures so it is not a UTI. They just tell me that I am "unique" and "one of those people who just bleeds when I urinate, even when not on my period. I also have severe deficiency in vitamins b12 and d, as well as iron. I was also confirmed FOUR times that I am positive for lupus inhibitors. I also often suffer with restless leg syndrome.
I have very long very thick hair so I do not have bald patches but I loose handfuls of hair every day. I also get the butterfly rash, and am constantly in pain even though I take high dose of pain killers. I have been asked by many, many doctors, nurses and otherwise if I have been tested for lupus and I do have to tell them yes, but that my rheumatologist tells me I do not have it. I am 25, was a body builder and now am on disability because I cannot function in a normal day-to-day life. I get scaly patches on my scalp, and I have dis coloured skin mostly on my thighs, and I get, what I call painless bruises but the doctors call them rashes They are small, quarter size or a little bigger, and I usually get a dozen or so at a time, when I do get them and they will show up mostly on my thighs, but will show up in other places. Also, my hands, fingers, feet and toes get blue/purple in the winter and I live in winnipeg, manitoba, Canada where winter is 7 months of the year, and our temperature is around -40 with many feet of snow, so they're that way a lot.
Asked On : Wed, 27 Mar 2013