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lch713 (@lch713)

Late dx, only 16% lung function

MAC & Bronchiectasis | Last Active: Sep 8, 2018 | Replies (4)

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@lch713 I know how that is. I was misdiagnosed with COPD and bacterial pneumonia for about 30 years also. And TB. and …… on and on. Every organ failing, but pulmonologist radiologist said I did not have COPD but did have a lot of other stuff. Any, after some study and testing, I have some form of Light Chain Amyloidosis, probably Gelsolin or Apolipoprotein or similar. I have a whole list of my symptoms and signs available. https://bit.Ly/1w7j4j8 "Amyloidosis…." Find a doctor you trust, cardi, pulmo…, onco…, hema… doesn't matter much, but they must order the test that Mayo (Dr. Martha Grogan) says, and have someone like ARUP labs or Mayo-Quant labs or Sloan Kettering do the analysis. If they show positive for SERUM protein outside the reference range, or Urinary protein above .5g/24hr, that's a good lead to follow. But you absolutely must have a doctor you can trust with your life, and who will follow directions from Mayo or Stanford, etc. The list of needed tests is also on my Amyloidosis and old karl paper. The testing is paid for by Medicare.

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Replies to "@lch713 I know how that is. I was misdiagnosed with COPD and bacterial pneumonia for about..."

Thanks for your reply, Karl. Our ID sent cultures to Jewish in Denver, so we did get more detailed info from them. Don't think he's had a CRP lately, but good reminder to ask them to check it. Have an appt at Mayo in November to have them weigh in on his treatment. He's been a patient there before for complicated total knee revision with infection. Sounds like you've learned the importance of being your own healthcare advocate as we have!