Help needed

[Stevennn2003]

Hello

I was wandering if anyone can recomand me a doctor in the uk specialised. Or beeter said who has a particular interest in finding rare lung diseases.

My story is long but to make it short im 37 years old and from 1 year im struggling with lung problems without a diagnostic yet

Im caughing up mucus mixed with blood all the time.

Cancer and other obvious diseases been rulled out

Ct scan show ground glass that clear

Bronchoscopy showed high level eusophilis.

I have seen 3 doctors all with no answer or treatment including one from Brompton.

If younknow someone please let me know

Thank you

Edit: Please ensure no Doctors are named here. If you wish to share Doctors' names please use the message facility. Thanks.

[janice01]

Sorry to hear this Steven,

Can you explain more about 'CT and ground glass please'....

I have been under Prof at Royal Brompton for many years.

I have several chest conditions and he's seen me through some pretty dodgy times....

[Stevennn2003 in reply to janice01]

My first ct scan showed subtile ground glass after 3 months because the symptoms were still there i have repeatd the ct .this thime a hrct high resolution. This one was normal no ground glass....

[janice01 in reply to Stevennn2003]

Sorry Steven, maybe it's me but l don't understand how ground glass was in your lungs....

Can you explained a bit more please?

[Stevennn2003 in reply to janice01]

Its a medical term ground glass opacity basically a shadow or something like that

[Katinka46 in reply to janice01]

‘Ground glass’ is a way to describe a pattern that shows on High Resolution scans. Not literally ground glass. Odd that it is there in one scan and then disappears. It is strange that RBH cannot help. They are the country’s experts on rare lung disease.

[Katinka46 in reply to Stevennn2003]

I had an HRCT: a radiologist looked at it “no evidence of small airways disease”. I tentatively asked for a second opinion from another radiologist. And there it was.... it is not the first CT scan in my case that was wrongly interpreted. My consultant was happy to ask for a second (“or third”, he said) opinion. Rare diseases are notoriously difficult to diagnose.

[Stevennn2003 in reply to Katinka46]

I had 3 radiologists looking on my hrct

All of them call it normal

That's why im looking for a doctor focused on rare diseases.

[Caspiana in reply to Katinka46]

Same here Kate. I went for three opinions. My doctor wanted me to. xx 🌷

[Wint in reply to janice01]

Just wondering it's Prof [edited to remove name of professor]

[janice01 in reply to Wint]

I did answer with first bit of Prof name, but it's been removed....

Guess we can't leave hints like that on this forum...

[mrsmummy in reply to janice01]

Which is why "Please ensure no Doctors are named here. If you wish to share Doctors' names please use the message facility. Thanks" was inserted into the post.

[janice01]

Thank you for the explanation !

Live and learn... do look at life rather literally, sorry...

It's a bit of a puzzle, but think people on here know more about their conditions than the hospitals or gp's do...

Wishing you the very best of British luck...

[Wint]

The RBH is so good.

[santisuk]

Papworth Hospital (near Cambridge) have a lung defence team approach where there are consultants from various disciplines (specialists in cancers/ lymphomas/ COPD/ asthma/ bronchiectasis/ immunology/ pathology/ radiology /cardiology that will review difficult cases in a team meeting once every week. They identified through the team meeting review my relatively uncommon malt lung lymphoma then, once that had been successfully treated but infections and mucus remained still evident, identified bronchiectasis.

[Hidden]

Royal Brompton is the best. Try Nottingham.