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Have fibromyalgia, myositis, high blood pressure, patches on scalp, and discoloured skin. Suggest

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
Answers:  1 Views:  72
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  User's Response
Thank for choosing HCM,, You are really, a unique person even after having multiple life threatening pathologies you are still doing good, not just doing good but wishing for more pathological changes in your body,, you know what happened, when person having multiple diseases and still doing fine,, the all diseases becomes therapies it self "effect counter effect" battle will continue till the last breath, just let the all disease do their job,, you enjoy the life.
Answered: Sat, 20 Jul 2013
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