I have been diagnosed with Hughes Syndrome 6 years ago. Just went to the Hellen Diller Cancer Center----UCSF. They say so few have Hughes and even rarer in men. In the past 4 years I have had 2 limps taken from the male breasts. I brome my spine a while ago. I had 20 titanium rods installed. 3 years later theyhad to come out due to a horrible infection, a 5 hour surgery. I am allergic to heparin. Tried Lovenox and Arixtra and got 2 cases of H.I.T. Beem doing 4 shots, 28 per week of Iprivask. I am always nauseas. I shave my body and only wear a tank top and shorts. I am unable to controlmy body temperature. I always turn beet red and have to be near air conditioning. My memory is going. I am in a wheelchair now 85% of the time now. No doctor can help me because they know nothing---Kaiser. I am always throwing up. I have been on an opiate reduction program which is good. But, my life really sucks. Anyone out there with any of this crap? Joe
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