Great info John! You are certainly a well and wealth of resources! I have the diagnoses and the positive Diagnostics but the specialists keep telling me how out of the box I am and complicated that I am. There still are unanswered and untreated things that should be able to be addressed however. I just can't imagine traveling, I just don't feel good enough. I am in bed most of the time. In and out but can't stay out too long. I guess if I get up the nerve and I'm able to articulate my reasons for wanting to go, then I could move forward with asking for a referral.

We do have the University of Washington here which is a teaching University and I have been seen there when four pathologists could not identify my lung specimens. Then a pulmonology pathologist at the University of Washington and their team diagnose my lung tumors as chemo dectomas. Years later, my pulmonologist reviewed all the testing they had done and found they had made an error and rediagnosed my tumors as Diffuse Minute Meningothelialomatosis. Benign but innumerable in both lungs. Almost nothing in medical literature; maybe 25 cases? Most have one or two large tumors in one lung but I 'm special and I have so many in both lungs that 4 pathologists said they are "innumerable". They keep an eye on them with CT scans.

The pulmonologist I saw at the University of Washington, told me they should not grow in number or size. On my 1 year post biopsy Cat Scan, they had grown both in number and size. But, thanks be to God, not since then. I will probably have another CT scan soon but they don't like to do so many of them and I am already glowing in the dark with all of the nuclear radiographic Diagnostics I've had over the years! My Bx's also showed asthma and mild emphysema. Go figure! Take care, Sunny

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