Hi Cindy. I am in the initial stages of diagnosis, still yet to be confirmed. I will know on December 2nd, when my doctor returns from vacation. As of Sunday the day before he left for vacation, my VEGF-D results were still pending. At this point, my radiologist has confirmed lung cysts that support “clinical suspicion of LAM,” a confirmed renal angiomyolipoma, and ongoing shortness of breath…don't we all. I was dx'd with mild emphysema, then “maybe it's just asthma,” then again with emphysema (both CLE and PE), now compatible LAM cysts with areas that also look like emphysema on HRCT (sigh). The back and forth has been going on for nearly 8 months, now all hinging on the lab results from OH. If elevated, confirmed without biopsy; if low, biopsy so “secure the diagnosis,” as my doctor says. I am scared but like you, feel in relatively good health. Thank you for your post. I am avidly researching as well. Nothing worse than being blindsided, unprepared. At least I can arm myself with knowledge. What else can you do?
By the way, I posted this comment on an older post and it sorta disappeared.
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