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lizaussie avatar

ILD diagnosis nothing helping

Lung Health | Last Active: Nov 18, 2025 | Replies (8)

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Profile picture for arbust91 @arbust91

Sorry to hear the situation . I live in a US state where many people have two drive over 5 hours for basic healthcare. I'm in a city of about 1 million which I would much rather live out on a farm like I used to but I can no longer .
Are there any asthma doctors? Or even a primary care can prescribe some things. A drug called Qvar significantly helps my symptoms generic is Beclomethasone . It is an inhaled steroid so not much leaves your lungs. While too many pulmonologist focus on sleep medicine if you can use the internet to try to find one the treats pulmonary fibrosis ( which is the scaring that creates ILD) that might help. There are several causes of ILD, so idk if you have had exposure to silica dust, asbestos , mold, etc? Another prevalent cause is autoimmune diseases. Try to get your primary to run an autoimmune panel becasue getting to a rheumatologist will help get you to a pulmonologist. There should be a national association of pulmonologist for AU that maybe a resource for finding the right doctor. There are several new medications for ILD which is why I think you should do what ever it takes to get to that ILD clinic. Melbourne is pretty big I would try calling the University hospitals and the larger hospital and asking for the pulmany department then asking who ever answers if they treat pulmonary fibrosis or ILD. A lot of hospitals don't just post online these things. I called the 3 big hospitals in Minneapolis after not seeing anything on their web sight and found out 2 have ILD clinics.

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Replies to "Sorry to hear the situation . I live in a US state where many people have..."

@arbust91

Good suggestions.
I will follow up the hospital ILD clinic and try and get an appointment.
The great thing about this site is that you are in touch with people who are going through the same thing - even though in different stages. ILD is not something you hear about, nor do I know of anyone here who has it.
I am sure it started with my having had a severe case of covid as from then on, my energy level was never the same and it started deteriorating. (Whether I came in contact with asbestos, silica or mold, I am unaware.)
Having to drive 5 hours for basic healthcare only happens here if you live in the country where they are short of doctors etc. I am fortunate living in the city, but I will say after covid, many doctors retired so you have to wait longer for an appointment.
Thank you so much for taking the time to respond with your suggestions.
Much appreciated,
Liz