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I need some input on this disease. I have been getting minnie flares(thats

what I call them) for over a year. Just the top part of the ear gets red and

burns and I get so tired and have no energy. In June I had a really bad

flare and my PCP told me what I had. I've gone to the Cleveland Clinic and

they have done extensive tests and the only thing they have found so far is

I've lost cartilage in my left ear and the tops of my right and a spot on my

vocal cord. I also have asthma and when I flare I usually end up having an

attack. My chest cavity swells up, pain in my rib cage, my throat feels like

its closing, nose hurts terribly. Since there hasn't been any real damage

yet are these the areas that they should be watching? Is this the most

likely place that there will be damage. I don't know if this disease has

stages or not. If so am I in the earlier stages. Oh yeah forgot. I am

waiting to hear about my cat scan of the chest and head. I hope someone can

help me. I'm in the DARK. Thanks in advance

Ann

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I need some input on this disease. I have been getting minnie flares(thats

what I call them) for over a year. Just the top part of the ear gets red and

burns and I get so tired and have no energy. In June I had a really bad

flare and my PCP told me what I had. I've gone to the Cleveland Clinic and

they have done extensive tests and the only thing they have found so far is

I've lost cartilage in my left ear and the tops of my right and a spot on my

vocal cord. I also have asthma and when I flare I usually end up having an

attack. My chest cavity swells up, pain in my rib cage, my throat feels like

its closing, nose hurts terribly. Since there hasn't been any real damage

yet are these the areas that they should be watching? Is this the most

likely place that there will be damage. I don't know if this disease has

stages or not. If so am I in the earlier stages. Oh yeah forgot. I am

waiting to hear about my cat scan of the chest and head. I hope someone can

help me. I'm in the DARK. Thanks in advance

Ann

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