LAMS Disease

[kelly444]

Does anyone know of all the test that can be done to diagnose Lams disease which is a rare lung disease

[Dr Santos]

Hi,
I do understand your concerns. Blood tests may be used to rule out other conditions such as asthma or bronchitis that may present with the same symptoms as LAM. However, the most useful method involves looking at samples of your lung tissue for LAM cells. Video-assisted thoracoscopy , open lung biopsy and transbronchial biopsy may be done.  Biopsies of lymph nodes or lymphatic tumors called lymphangiomyomas may also be done.  Discuss with your doctor about this. Take care and regards.

[kelly444]

Thank You doctor. I have all the signs and tha cysts already covered my lungs along with several large ones, There is also two large ones in the pelvis area, and three on my liver. I am not concerned as much about those ones but as for my lungs I am still getting good o2 levels and passed my breathing test. I did have the pneumothorax about ten years ago and had to have a hysterectomy at age 20 due to uterus covered with cysts. I just now after five years of tons of cat scans found a lung doctor who says he thinks I have lambs disease. He wants to do an open lung biopsy to confirm his diagnosis. Is there any blood work he could do to confirm this diagnosis? The rease I ask is I know as many cysts as are on my lungs that as soon as he does the biopsy it is going to collapse my lung again which I can deal with but if there is an easier way out I will take that route. He says that is must be slow progressing but he is sure it will effect my o2 and breathing within the next few years when they start blocking my airways.