Scared for my wife...

4 Posts | Page(s): 1 

Scared for my wife...

by PleaseHelpMeNow on Thu Oct 29, 2015 02:09 AM

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I posted about 20 months ago.....my wife delivered a beautiful baby girl. Our first child. 

Again, my wife had another "episode" ....

Flushing of the skin

Abdomen pains

Severe Diarrhea

Rushed her to the ER. She's been having these "episodes" since she was 20 (she was earlier diagnosed with IBS and sinus tachyardia). This was I think her 6th and most severe episode...On top of the aforementioned, she had vomitting and blood in her diarrhea. Because of this....Doctors are doing A LOT MORE TESTING...we're on our 4th day here in the hospital....urine/stool tests, CT Scan, X-Ray, and soon an MRI. 

Everything has come back NEGATIVE thus far which is extremely scary as all I'm thinking, it's going to be carcinoid. I knew we should have went to Buffalo, NY where there are specialists there (we live in Rochester, NY --- only an hour away). 

I'm sitting here in the hospital, losing my mind, googling all this information about this rare disease. How can a perfectly healthy fit mother at the ripe age of 32 be dealing with this?!?!? And she is a saint, not to be biased or anything.....

All the symptoms are adding up to NET/CS ........ all these doctors were so dismissive of it early on, and of course you want to believe them.....5-HIAA came back negative....GI doctor, cardiologist, endocrinologist all came back with no information, so we went on with our everyday life.....yet, we're back here again, after a more severe episode (Yes only 6 in the past 13 years), but still scary nonetheless.....Now, we're adamant to get to the bottom of this......but, if it is....what is next?!?!?! I'm so scared......I'm not the best optimist in the world.......I'm here for support, words of encouragement, survival stories, reassurement, advice, suggestions, prayers, anything you got......Please help me now!

Sincerely,

Scott

RE: Scared for my wife...

by PleaseHelpMeNow on Thu Oct 29, 2015 03:48 PM

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Doctors are saying,

"Ischemic colitis"

Is this another diagnosis to cover up a major issue. As we know, there are many doctors clueless or have never seen Carcinoid/NET in real life. 

They also say she has a Mast cell problem. 

First, it's IBS, sinus tachyardia, now this......everything still points to Carcinoid from what I read....am I being overly paranoid, or should we visit a CARCINOID SPECIALIST in Philly/NYC to get some more clear cut answers?!?!?!

Any help or advice would be greatly appreciated. 

RE: Scared for my wife...

by deb777 on Mon Mar 21, 2016 01:56 PM

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On Oct 29, 2015 3:48 PM PleaseHelpMeNow wrote:

Doctors are saying,

"Ischemic colitis"

Is this another diagnosis to cover up a major issue. As we know, there are many doctors clueless or have never seen Carcinoid/NET in real life. 

They also say she has a Mast cell problem. 

First, it's IBS, sinus tachyardia, now this......everything still points to Carcinoid from what I read....am I being overly paranoid, or should we visit a CARCINOID SPECIALIST in Philly/NYC to get some more clear cut answers?!?!?!

Any help or advice would be greatly appreciated. 

PleaseHelpMeNow, I just wanted to reach out to you. Just your username caught my attention. I don't know if you believe in God, but let me just say... GOD BLESS YOU and your wife. And, although our situations aren't the same, I wanted to give you some hope today. My husband was diagnosed with poorly differentiated, high grade neuroendocrine carcinoma of the pancreas in March 2014. It had spread to his liver. It was stage 4. Doctors gave him weeks to live. He was put on emergency chemo - Cisplatin, Etoposide... By July his cancer was not visible by CT scan. And later, a biopsy of some "suspicious looking tissue" came back benign. Last weekend I video taped him skate boarding in our driveway with our 5 year old daughter. Don't lose hope. DON'T LOSE HOPE. I will pray for you. Miracles are possible. 

RE: Scared for my wife...

by LorrieS on Wed Mar 23, 2016 07:57 PM

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Hi,

I just want to encourage you and your precious wife. Please, get her to a Carcinoid / Neuroendocrine specialist. They know the signs or red flags of carcinoid. If she has it, the quicker they start treating her the better. This is rare, and most Dr.s have heard of it, but really don't understand it enough to prescribe a treatment. It's treated with surgery if possible, also certain drugs are used for it.  Only Neuroendocrine and Carcinoid specialists know the proper diagnoses and treatments. The quicker your wife is checked out by one of the specialists, the sooner she can be treated the less damage it does to her body.  I went to Dr. Woltering and his team in New Orleans (Kenner) LA. There are others, but of course I'm partial to them. He's very open to discussion and easy to talk with, and gives so much hope. I will be praying for your wife and you.                          God bless,   LorrieDabdoub

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