Since 1984 I have had difficulty breathing when exerting; walking, exercising, etc. For years I was misdiagnosed as having some sort of asthma but none of the asthma medications helped. Finally in 2004 a bronchoscopy was performed and a tissue sample sent to the Mayo Clinic the diagnosis came back as Carcinoid Tumorlets. Then 3 years ago with another scan the diagnosis was more specifically called DIPNECH with carcinoid tumorlets. Carcinoids can be found in several organs but mine are in the lungs. Even though I had been told by many physicians oxygen wouldn't help, my current physician prescribed oxygen and my life has improved considerably. I am trying to get the message out about this disease, although rare, I believe there are many other people out there with this disease but it just isn't being recognized. There are a few websites out there to help educate.
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