Mild ground glass opacities and blood markers for autoimmune disease

Posted by jeng1176 @jeng1176, Aug 27, 2021

Hello, I am wondering if I am over reacting to some tests results I have just seen. I have been having an ongoing extremely loud dry cough and shortness of breath. I do have asthma and in the past I have always had it very well controlled with Advair once a day and Albuterol as needed. But something has changed and my inhalers are not getting rid of the cough or getting rid of this tight feeling I have. I feel like I can not breath in deeply and take a full breath. I also have lots of achiness and joint pain. So my PCP ran a bunch of blood work. I have positive ANA titer 1:640. Speckled. High ESR. High inflammation markers, and a low positive scl-70. Everything else seems to be in normal range. I did a pulmonary function test which was normal. I had a cat scan that shows a linear scar in medial r lobe that has not changed since 2017 and mild ground -glass opacities in lower lobes. It also said probable small airway disease. My rheumatologist has not called me back about my cat scan results. I saw him at an appointment a couple weeks ago before the cat scan and all he said was he thinks I probably have a connected tissue disease and he wants to monitor me and see me again in December. So is this a good plan? I'm just supposed to go around not feeling good and see if I get better or worse? I feel like I am lost in the shuffle. I called to ask about my test results but the nurse said my doctor is out of town and that he would have to be the one to talk to me. I am wondering if someone can give me a professional opinion of what should happen next.

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This is wonderful, encouraging words! Thank you so much💕

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Change doctors. Find someone who's attentive and concerned.Your physician's actions are inexcusable. He should remember when he decided to be a doctor, he decided to be a caregiver. HIppocrates said "Do no harm" not "Do nothing."

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Hi- our medical situation sounds similar. I had a lower left lobectomy in 2013- ground glass nodules (with no cough symptoms)- which were an incidental ct finding after a round of bronchitis. Followed them for almost two years before agreeing to min invasive surgical removal at Duke. Benign.
Also, followed by rheum for Raynauds for ~15 years and more recently for scleroderma.
Logistically, if you can connect w/ a major teaching medical center, you will have better options for locating md’s with a depth of exp treating scleroderma folks. I am sorry this is so difficult to navigate. Sending good health vibes your way.

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Yes, you are the one lost in the typical medical shuffle, and yes, you should change doctors if you can find one.

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You must see a pulmonologist. Mt husband had ground glass which was in front of cancer. He removed it and is absolutely fine.

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@jeng1176

Thank you Elizabeth! I do agree on assertive not necessarily aggressive 🙂. I will get through this and hopefully all will be good! It's just become tiring coughing so much and being short of breath. I am a massage therapist and it's terrible if I cough during someone's session. But I'm going to keep a positive attitude🤗

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I have been reading through all the responses here, and thought I would mention that having an autoimmune disease, with a high SED rate, can place you at risk for a lung condition called bronchiectasis, which may be missed in diagnosis, or may be what was called "small airways disease" in the report. Asthma also increases your risk. If so, the opacities may be a mark of a lung infection, further supported by your reports of coughing and tiredness. In the testing, has anyone asked for a sputum sample, or suggested a bronchoscopy to "harvest" some mucus from your lungs for testing?

My bronchiectasis went undiagnosed for years, and by then I had lung infections from 2 types of bacteria, was coughing constantly, and could barely walk a block.

Knowing what I do now, after finally getting my life back, I would suggest that you see a pulmonologist. If you can, find one who lists bronchiectasis among their areas of interest (or ask to talk to their nurse before scheduling.) If it is possible for you, you could also check into being seen at Mayo (Minnesota, Florida or Arizona), National Jewish Health (Denver) or Cleveland Clinic, all of them with a great deal of experience in this condition.

Sue

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@sueinmn

I have been reading through all the responses here, and thought I would mention that having an autoimmune disease, with a high SED rate, can place you at risk for a lung condition called bronchiectasis, which may be missed in diagnosis, or may be what was called "small airways disease" in the report. Asthma also increases your risk. If so, the opacities may be a mark of a lung infection, further supported by your reports of coughing and tiredness. In the testing, has anyone asked for a sputum sample, or suggested a bronchoscopy to "harvest" some mucus from your lungs for testing?

My bronchiectasis went undiagnosed for years, and by then I had lung infections from 2 types of bacteria, was coughing constantly, and could barely walk a block.

Knowing what I do now, after finally getting my life back, I would suggest that you see a pulmonologist. If you can, find one who lists bronchiectasis among their areas of interest (or ask to talk to their nurse before scheduling.) If it is possible for you, you could also check into being seen at Mayo (Minnesota, Florida or Arizona), National Jewish Health (Denver) or Cleveland Clinic, all of them with a great deal of experience in this condition.

Sue

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Thank you!! Yes I will be seeing a pulmonologist! I will be asking all these questions!

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@sonya_nc

Hi- our medical situation sounds similar. I had a lower left lobectomy in 2013- ground glass nodules (with no cough symptoms)- which were an incidental ct finding after a round of bronchitis. Followed them for almost two years before agreeing to min invasive surgical removal at Duke. Benign.
Also, followed by rheum for Raynauds for ~15 years and more recently for scleroderma.
Logistically, if you can connect w/ a major teaching medical center, you will have better options for locating md’s with a depth of exp treating scleroderma folks. I am sorry this is so difficult to navigate. Sending good health vibes your way.

Jump to this post

Thank you! I am going to see a pulmonologist where I live and see how that goes but I may end up switching to university of Madison since it is so close and my insurance covers, but I would rather go to Mayos in Rochester

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