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@sueinmn

Good morning, Helen, Not Kathy, but here is a list of questions to ask:
https://www.lung.org/lung-health-diseases/lung-disease-lookup/bronchiectasis/questions-to-ask-your-doctor
When you say you think you may have been misdiagnosed, what do you mean? What symptoms or issues do you have? Are you consulting with a pulmonologist or infectious disease specialist who is experienced in treating MAC, and working with complex diagnoses? Many who routinely deal with typical asthma and COPD cases are not aware of the special needs we have.

Sue

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Replies to "Good morning, Helen, Not Kathy, but here is a list of questions to ask: https://www.lung.org/lung-health-diseases/lung-disease-lookup/bronchiectasis/questions-to-ask-your-doctor When..."

Hello Sue, thank you for the form. I was diagnosed with TB in 8/2015. I went to see my Primary as I had a cough and it became noticeable. My skin test or PPD was negative but my x-ray abnormal. I was then referred to a Pulmonologist 9/15. I worked in a TB Clinic as the Administrator and was put on INH. I had several. Bronchoscopies which were negative. The only positive was a blood test the QFT Test. I started losing weight and was fatigued due to this the decision seemed right for TB Treatment but, my cough now considered chronic cough became worse and never went away. During the end of my INH Treatment my cough lessened and we thought I was better. A few months later my cough was worse and more tests done. I asked about MAC then and was told I now have Bronchiectasis. I was given several meds and cough syrup with codeine. I was then told I have asthma. In 2018 I began feeling worse and could barely manage working and running my home and family. In 2019 I relocated my position and transferred my care to a Pulmonologist referred by my original Pulmonologist closer to home I was put on steroids (Predisone) 60mg daily and Bactrim an antibiotic 3 week 10/20. I believe these 2 drugs helped me as I contacted COVID 12/20 and was very ill but, could have been worse. In between these times I have been sick with fatigue, weight loss, chest pain, headache and was having a difficult time. I retired in 3/21 as I kept getting sick and had a hard time with my cough and my voice was nearly gone by the end of each day. I would be given meds for stomach issues, thrush, and the steroids. I was then told I have Hypersensitivity Pneumonitis and Intestinal Lung Disease on top of Bronchiactesis and asthma. Once I started seeing the Internal Medicine MD I advised my Pulmonologist we needed yo decrease the Prednisone and we did at my insistence I am now 10 mg. This decrease was due speaking with the Internal Medicine MD in April 2022 in . They only found the MC as 3/22 I was not feeling well and kept telling my Pulmonologist my chest hurt and felt hollow. Then ER MD was great and ordered several tests and a CT Test. Unfortunately they found a mass and I have a large cavity with lots of nodules/cysts. I was advised April 2022 I had MAC. Was referred to a Internal Medicine and several blood tests and sputum collected. I was put on 3 of the MAC Antibiotics June 2022 again at my insistence as he wanted to wait for the sputum culture.. The 4th. Antibiotic Arykace was started this month 7/1/22 as he was waiting for the culture. It was on my insistence to start the 3 MAC Antibiotics. Sorry for the long response but frustrated and know even if misdiagnosed my outcome is not good and taking all these meds is not the easiest and feel defeated.. Any advise would be appreciated.

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