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New DIPNECH diagnosis, need advice on doctors
Neuroendocrine Tumors (NETs) | Last Active: Nov 17, 2024 | Replies (39)Comment receiving replies
@dipnech67
Robert Ramirez MD at Vanderbilt in Nashville is a NETS specialist who talks about DIPNECH more than anyone I’ve heard. I have DIPNECH that was misdiagnosed for 30 years. Monthly octreotide injections have really managed the symptoms well and been life changing. True that DIPNECH is slow growing but very symptomatic and can turn into lung NETs as mine did so it does need to be managed and monitored. I was told at UCLA that it’s not the 50+ tumors we can see that cause my respiratory issues but the hundreds or thousands of tiny nodules that line my airways that cause issues and octreotide helps that. Inhalers didn’t help. Hope this info helps. Zebra
Replies to "@dipnech67 Robert Ramirez MD at Vanderbilt in Nashville is a NETS specialist who talks about DIPNECH..."
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Sorry your going through this.
Thanks for your response. If you do not mind, I would like to ask some questions.
They say they do not know what causes it.
My question is. Did you ever live on a home with a basement. I only ask because I did, for 20 years. My home had Radon. They said it would not cause DIPNECH, but how would they know, with out asking questions like this to their patients. Now, let's say you did have a basement. You might not of known if you had Radon unless tested for it.
I'm just trying to find out the WHY!
If you know what I mean.
Also, most people are misdiagnosed. Well that's great. That just means there might be others that do not realize what they are really dealing with.
Look at you....for 30 years you had issues.
I'd like to be able to talk with you if you would be OK with it.
I'm from central Virginia. Amherst to be the location. Heck, I'm at the point we're I eant to speak to anyone and everyone going through this. From what I read about, there isn't very many of us and I'm sure we all want answers.
Maybe compare life styles to see if something triggers this dreadful stuff to appear.
Thanks for your remarks, hope to hear from you soon.