langerhans cell histiocytosis

[leanne75]

hi there just wondering if anyone else got pulmonary histiocytosis?i hear its very rare i thought i had severe emphysema but just been told its this feeling pretty fed up as i thought i were gonna get valves put in n may get to breath abit easier but not gonna happen now

[mrsmummy]

I am not sure whether any of our current members has the same condition but if the have I am sure they will try to help. If you are seeking further info I suggest you also give the BLF helpline a call. The nurses there are very knowledgeable. The number is 03000 030 555 and they are open office hours.

[Lin76]

I have it. Live in usa. In lungs,and i think spreading. I do not know. They tell me radiologist that did my ct called it langerhans disease. Pulmonologist scaired me by saying,we can't go by that you need biopsy but it can collapse lung or worse. I think he knew this for over a year. Kept me in dark with saying you have a spot on lung. Now it migrated and i got 2 more areas. So i don't know. Who to go to,whats the prognosis i know nothing other than do not smoke. My teeth crumbling in mouth too. I have no idea if related but seen another person on web site here say it in her jaw bone. I read it can be in other areas but drs won't do additional testing like braf lab work,pet scan,just repeating cts. Had 3 in one year! 5 total as I also have a very rare cardio vascular disease called nut cracker syndrome. If you can tell me any of your types of labs or testings please share. Theres alot to read about on children,and adults theres not.