More problems!

[Sandrapez]

I have pulmonary landerhans cell histiocytosis of the lung, things have stayed the same with the lung, but now worried that it is in my jaw bone! There is a lump in the side of my cheek which they are going to biopsy, but the worrying thing is they have found bone lesions as well, so worried, that it as spread! Feel so down!!😪😪😪

[Ergendl]

Dear Sandrapez, ((((Hugs)))).

[Sandrapez in reply to Ergendl]

Thank you

[Sandrapez in reply to Ergendl]

Thank you..xx

[Tilley19]

Thinking of you God bless your

[Sandrapez in reply to Tilley19]

Thank you

[Magpuss]

Wishing you well xx

[Sandrapez in reply to Magpuss]

Thank you

[Sandrapez in reply to Magpuss]

Thank you x

[Hidden]

Hi I had never heard of this before so I googled it. It does sound like a nasty illness and I am sorry you have it. I wish you all the best. Hugs for you. xx

[Sandrapez in reply to Hidden]

Aaaaw thank you for taking the time to google it!

[Hidden in reply to Sandrapez]

I always do when I have never heard of something. I must admit I was shocked to hear that smoking is a primary cause of it. I feel grateful to 'only' have copd after reading that. Let me know how you get on please. Hugs xx

[Sandrapez in reply to Hidden]

I will do and thank you..x

[Sandrapez]

Thank you 😊

[Linda8p]

Thinking of you sending big hugs.

[Sandrapez in reply to Linda8p]

Thank you 😊

[Purl123]

I'm so sorry to hear of your diagnosis it's a terrible feeling when this happens. Try and keep positive and know that you are on my thoughts and prayers, keep us updated x

[mellyme]

So you are having a rough one at the moment, but you have tons of love and support from us. Keep on writing and sharing with us. Pain shared is pain lessened.

[Min97]

Hi, please chat with me!! My mom was just diagnised with this plch in her lungs. She suspects it to be in her bones and her teeth as well due to pain/teeth breaking. I cant find a doctor with knowledge of it in the eastern united states. Im so sirry you have this disease as well. How many spots on your lungs? How long have u had this? Have you found a Dr who knows about it? Where are you from?

[Lin76]

Hi im following you, prayers as i read. I have it too,upset bout drs who literally did nothing but CT. From usa. Fearful in my mouth. My teeth crumbling apartvwhere there was fillings. Do your lungs hurt you? Mine do and feel like how it feels when your fingers need cracked. I got fractures in my back wondering ifvthats it too. I am in process of finding a new dr? Its awful. I wake up sad but then think I could be so worse off. Children get this badly,im 58. I feel guilty almlst as I dont want sliced diced probed,because I had 2 major surgeries and they d/c you home,I live alone,and still in pain. So afraid of drs because I am a nurse,know too mjch about the bad. Take care. We are rare so I guess we are rare together