Room for one more? Recently diagnosed... - Lung Conditions C...

Lung Conditions Community Forum

57,083 members•67,628 posts

Room for one more? Recently diagnosed with emphysema without any obvious cause.

Hi there,

I have been following this forum for a while, finally decided to sign up today. Hope you have room for one more ☺️

I have recently been diagnosed with severe unilateral panlobuloar emphysema with several large bullae in the lower lobe. Due to the emphysema I have moderate COPD.

I have been tested for Alpha-1 Antitrypsin deficiency and a range of interstitial diseases, all came back normal. Haven't had multiple infections in my childhood either. As I am 34 years old and have never smoked or been exposed to any potential harmfull environmental factors, it is quite a mystery for the doctors why I've ended up with this. I have an appointment at a clinical genetics unit later this month, curious to see if they are able to find anything unusual that might explain why I have ended up as a lung patient.

Any inputs or suggestions to my condition are very much appreciated. Besides that, I just wanted to introduce myself and say hi to all of you. English is not my native language, but I hope we will manage anyway.

Wishing you all a lovely Sunday.

Written by

MsMoeller

To view profiles and participate in discussions please or .

Read more about...

14 Replies

•

Nanny10869 years ago

Hi ,your more than welcome to our friendly group ,,,,,however I'm afraid you lost after ,,,,COPD ,,,but I'm sure there are others far more knowledgable than me who will have some answers or advise for you ,.best wishes ,have a lovely day ,😀

Katinka469 years ago

Hi MissMoeller. Welcome to this brilliant forum.

I am interested in your story. May I ask a few questions?

How was Pan-lobular Emphysema diagnosed? Presumably you had a High Resolution CT scan? Did it show mosaic patterning and air trapping? And how was the diagnosis of COPD made? The reason that I am so fascinated is that the condition that I have, Obliterative Bronchiolitis (OB), can look like pan-lobular emphysema. Also a superficial analysis if my spirometry results and pulmonary function test results again looks like COPD. I am on very dodgy ground here as your doctors may have eliminated OB.

How did it all start? OB is often sudden onset. Usually caused by inhalation of something toxic, or an infection.

Are you in Britain, and who diagnosed these conditions?

Sorry about the interrogation, but I am very interested.

Because COPD and Emphysema are common, (sorry, friends, but that's true, not suggesting for one moment that you are common, we are all very rare creatures here, but the condition is) it is too easy for doctors to go down that route without thinking of other possibilities.

If you have the time please get back to me.

You can PM me if you feel that would be easier.

K xx

MsMoeller• in reply toKatinka469 years ago

Sounds interesting, will send you a private message ASAP.

Mktbrat• in reply toKatinka468 years ago

Is that the same as bronchiolitis obliteraten ?

9 years ago

Hi and welcome sounds like genetics are key THIS loads things can cause lung diseases.

Have the said out about bronchitissais.

only thing i can think of if dont smoke have you had any infections anywhere that have been left unresolved if not could be factory or work pollutants.

But genetics is right way forward

MsMoeller• in reply to9 years ago

Thanks for the input, Jeff. Will check it out 👍

MichelleT519 years ago

Hi, and welcome. Hope you get the answers you're after. For me it was genetics ... and smoking. The genetics should have warned me off the smoking!

Michelle x

Bagpuss19729 years ago

Hello MissMoeller and welcome to this great forum. I have different conditions to you so can't really advise re your health issues but you're certainly most welcome here on the forum, we are all very friendly. I'm sure others with your condition will be able to offer some good advice to you. Take care.

MsMoeller9 years ago

Thank you for your warm welcome 😀