← Return to Radiation/fibrosis ick, anything at ALL I can do to prevent/reduce it?

Discussion
Comment receiving replies
Profile picture for Zebra @californiazebra

@diamonddog
Do you have any respiratory symptoms from the granulomas? Are they slowly growing by any chance?

I have over 50 lung nodules that were discovered on a CT in 2008. I had an unexplained chronic cough every hour of the day since about 1990. It took 12 years to diagnose the nodules with so many specialists of all kinds baffled. Many of them guessed they were residual from a past infection. That never made sense to me since they were very very slowly growing. Turns out I have a super rare condition called DIPNECH. Only about 300 documented cases in the world but they believe it is underdiagnosed because doctors aren’t familiar with it. It’s called DIPNECH. Google it just in case. I’ve been taking octreotide injections for 4 years and they stopped my cough. Life changing!

Jump to this post


Replies to "@diamonddog Do you have any respiratory symptoms from the granulomas? Are they slowly growing by any..."

Thank you zebra!! I will check that out. I don't have any coughing, but don't know about the slow growth. I just had a CT scan and am awaiting a meeting with the RO to discuss, so I guess more will be revealed soon. Take care of yourself.