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New DIPNECH diagnosis, need advice on doctors
Neuroendocrine Tumors (NETs) | Last Active: 20 hours ago | Replies (36)Comment receiving replies
Hi,
I'm 67 years old. Have been mis-diagnosed for over 5 years. 2023 Dr. finally walks in and tells me he believes I have DIPNECH. I have been trying to tell my Dr's this is not asthma, I even changed Drs. Now unfortunately my Dr is not a DIPNECH Specialist. I want to find one immediately. Even though they say my lung nodules are not increasing, I feel worse with dispenia. I've learned how my cough
works. I find myself sitting alot, heaviness on just when doing most anything.
I need a Specialist.
Can someone help me find one. I am in Virginia, I will travel.
Thanks
Replies to "Hi, I'm 67 years old. Have been mis-diagnosed for over 5 years. 2023 Dr. finally walks..."
Welcome, @dipnech67, you are wise to seek a specialist. I'm sure you have seen the recommendation made by members in this discussion. You may also be interested in this journal article:
- DIPNECH: The Mayo experience. https://ascopubs.org/doi/10.1200/JCO.2019.37.15_suppl.e20029
If you would like to request a second opinion with a Mayo Clinic specialist, you can submit a request here: http://mayocl.in/1mtmR63
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@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