Groundglass in lungs

[zizzcat]

hi, am here again, hopefully for a while. doesn't feel very safe out there sometimes and my family can only take so much.

i have a very aggressive immune disease but undiagnosed.
i picked up a report of my last lungs ct on the way to the pulmonologist.
it had phrases in it like Groundglass opacites in tree bud formations.
i picked up the report to consult my dr about very severe pain in my right lung.
he had told me during the previous visit that the ct scan showed improvement.

i asked him if this was already considered interstitial lung disease.
i didn't put him on the spot and asked him if or why he lied.
he said it's not fibrosis of the lungs yet, which is the last stage.

he prescribed daliresp (4 last stage of COPD). am already on 20 prednisone, inhalers, 2 double nebulizers treatments, theophylline, and was on 200 mg imuran (immune suppressant, which was cut in half because I don't test positive for Wegner's or lupus.
my understanding is that lupus doesn't eat thru cartiledge like this does.
I have pain meds.

yesterday I dealt with it as best I could and without dire explanations to my family.
today I feel like the rug was pulled out from under me and I'm still tumbling.
how do I find my center again?

[Dirty Don]

Zizzcat, your 'center' is always with you; it's a matter of believing in & executing the correct protocols. You're not dxed yet? Sure sounds like GPA/WG to me. My lungs were 'ground glass' also, docs didn't know why, they sent out lung samples to Mayo, they dxed correctly. I was lucky in that respect that someone had sense enough to 'send out'! Good news is, after following protocols & so on, my lungs cleared up after many drugs in particular large doses of prednisone. Just 'cuz you're not testing positive for WG does not mean you don't have it. My gosh, your doc needs to get on the ball...your dosages are low, and methotrexate & rituxin are much more powerful & will help you more. Best to you, hang tough.

[Middlesista]

Also had ground glass opacities - cleared with Rituxn and prednisone I was told. What I have learned is that you really have to see the reports yourself....

[MikeG-2012]

If your doctor is not giving you what you think is the right treatment, GO FIND ANOTHER ONE! Find a vasculitis specialist somewhere.

I'd sure like to know what "test for Wegeners" he's performing. There is no ONE test that diagnosis this disease. Wait, there is one, and that is a biopsy of affected material.

It sure sounds to me like you have this stupid disease. Right now, YOU have to be your own advocate and PUSH HARD to get a proper diagnosis!!

[Lily0303]

I agree with MikeG. When i was first diagnosed it took doctors MONTHS and a month and a half long trip to intensive care unit to figure it out. You have to keep pushing and pushing not matter what!