5 plus years of fear,uncertainty, pain, hospitalization
I will briefly relate events beginning in Dec 03-I get jogged from one to another doctor, and I cannot take much more
Dec 03--Walked into ER (but driven by friend) pausing every second --to breathe
Upshot: hemo of 4.5/ transfused/ no diagnosis
July 04-Carried into ER-- I had collapsed--hemo 6.5/ "acute respiratory failure" (multilobular pneumonia)
Summary: more transfusions--last in May of 2007
Scopes, pill cameras, barium series (repeatedly) disclosed no specific bleeding site; could reasonably infer that blood coming from small bowel, colon, rectum (I at this point thought of vasculitis)
Still seep blood--or find black "clots" in stool-hemo is 2 "points" fewer than my normal adult, but it is not a problem
IN July of 05--I had shingles; immediately followed by what was diagnosed as being sebboreahic derma on my scalp and also 3 curious coin shaped lesions on upper arm-linear,same-size but erupted spontaneously and burned
IN the following months I developed lesions on my legs that bled spontaneously; then purple mottling on knees and purpura on weird places like mid-neck. But these eruptions were widely apart in time.
But only in the last 4 months has the skin been almost consistently afflicted. REd spots under skin; subcutaneous nodules (often painful) on both hands. On legs and kness very small lesions, but if one is sim,ply rubbed, it bleeds profusely. In fact, whole leg and now arm will turn flaming red if merely patted gently with cloth.
Christmas 20008-At about 5 PM I began having such pain in and down my left shoulder, I was screaming, I did not want to go to ER b/c unless I needed a transfusion, they could do nothing and looked at me as tho I were a wild woman. (EX_Stood up at home one day took 1 step and all was going black--I managed to call 911-but was in and our of it for hours--and pretty disoriented)
IN last5-6 weeks one after another joint has made itself known with pain and a bulge.Now I had--overnight--developed arthritic joints one after another. That these nodes were arthritic were confirmed but unexplained by a "specialist."
This last week-end, black out and simply falling down. Small cerebral hemorrahge? Well, where now?
I have only weak pos ANAs.
But blood keeps coming from everywhere--first bloody nose in life, inflamed urether (blood in urine very evident)
Family not supportive...
Does this SOUND like SLE or should I be looking elsewhere? I am very depressed.
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