More problems!: I have pulmonary... - Lung Conditions C...

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More problems!

Sandrapez profile image
Sandrapez
β€’19 Replies

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!!πŸ˜ͺπŸ˜ͺπŸ˜ͺ

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Sandrapez profile image
Sandrapez
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19 Replies
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Ergendl profile image
Ergendl

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

Sandrapez profile image
Sandrapezβ€’ in reply toErgendl

Thank you

Sandrapez profile image
Sandrapezβ€’ in reply toErgendl

Thank you..xx

Tilley19 profile image
Tilley19

Thinking of you God bless your

Sandrapez profile image
Sandrapezβ€’ in reply toTilley19

Thank you

Magpuss profile image
Magpuss

Wishing you well xx

Sandrapez profile image
Sandrapezβ€’ in reply toMagpuss

Thank you

Sandrapez profile image
Sandrapezβ€’ in reply toMagpuss

Thank you x

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 profile image
Sandrapezβ€’ in reply to

Aaaaw thank you for taking the time to google it!

β€’ in reply toSandrapez

:) 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 profile image
Sandrapezβ€’ in reply to

I will do and thank you..x

Sandrapez profile image
Sandrapez

Thank you 😊

Linda8p profile image
Linda8p

Thinking of you sending big hugs.

Sandrapez profile image
Sandrapezβ€’ in reply toLinda8p

Thank you 😊

Purl123 profile image
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 profile image
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 profile image
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 profile image
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

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