Rare lung disease

[Sandrapez]

Feeling let down, it's a year since I've been diagnosed with langerhans cell histiocytosis, and still no further in treatment! Just had X-ray which showed up cysts on the left lung, now awaiting c.t scan , the 8th in the last year, does any one else in this site have the same disease and do you have any cysts? Any help appreciated!

[sassy59]

Pete doesn't have that disease Sandra but l just wanted to wish you well and hope you get all the help and treatment you need. Xxx

[Sandrapez]

Thank you sassy59 👍

[Caspiana]

Hello Sandrapez . I don't have the same condition as you do, but I do have a very rare lung disease for which there is literally no treatment available. I do hope things progress for you. Please do let us know how your treatment goes.

Sending you happy thoughts.

Cas xx 🌷

[Sandrapez]

Aaaaaaaw thank you cas, hope you are o.k to.. 🤗

[Lin76]

I have this too. I so afraid. USA,. Had 2 drs blow me off switchingvto different hospital. I got it in my lungs. It hurts. Will you keep on posting. Best to you with prayers

[Mrsclh]

Hi are you still on here? I was diagnosed last year and getting nowhere its so frustrating x