Really Confused now?

Having been diagnosed with IPF in December a second Consultant and a professor have looked at all of my results including CT scan, X Rays and lung biopsy and have decided I do not have IPF but have actually got ''chronic hypersensitivity pneumonitis''. I'm seeing the Professor on Friday to discuss diagnosis and treatment. I thought a lung biopsy was conclusive but apparently not. How can ''experts'' disagree so widely. (I was also wrongly diagnosed and commenced treatment for TB before the above diagnosis's were made)!

8 Replies

  • Hi Mary, Like yourself I was diagnosed with IPF in January last year and there have been others in the same boat we only go with what we are told, and the next time I see the Consultant i will ask him to explain why I was told i had IPF, good luck. Matt

  • I find this amazing to see your ct scan does not show ipf it can be seen on a massive scale. I also have black lungs with not much grey lung which is healthy which is why im terminal.ithink they would be capable of diagnosing the right disease by now get answers from them its your life they are playing with

  • Apparently CT scan severely abnormal but not typical of IPF. So send for lung biopsy which did show IPF. Now a different Consultant says it doesn't. Seeing that Consultant on Friday???

  • Hi Mary1956. I hope they can sort something out for you soon. It's good if you don't have IPF. I don't know about the other thing. Let's hope whatever they find there is some treatment for it. X

  • They call it "practicing medicine" for good reason, it's not an exact science. While biopsy is usually above all conclusive with hard to diagnose pathologies, even pathologists can vary on biopsy interpretations. In tricky cases, doctors often collaborate.

  • Hi Mary, I too have chronic hypersensitivity Pneumonitis. I think it is quite difficult to distinguish between them. I was initially told I had hp after a biopsy then it could be IPF and then back to hp. Have they been able to identify the cause? My hp has responded to steroids although I have had a couple of bad patches.

  • Hi, Had a load of blood tests today to try and distinguish cause so wait and see. They are going to treat me with low dose chemotheraphy and steroids.

  • Mary 1956, your not alone in your confusion, it never ceases to amaze me how definite diagnosis in this technological age can vary so much and how medics interpretation of results can vary. It only adds to our ordeal being unsure whether what is said is correct. Hope tomorrow things will be made clearer for you,its so disconcerting when you already had one wrong diagnosis but this seems quite a frequent occurrence in lung conditions. Many of us have been in that position ourselves, guess it's due to symptoms being so similar for many lung diseases. Good luck tomorrow

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