New-need advice

5 Posts | Page(s): 1 

New-need advice

by jesimesi on Tue Oct 06, 2015 12:20 AM

Quote | Reply
Background: For the last 14+ years I've had "spells". Always after eating. Dizziness, nausea, flushing, diarrhea, fainting, vomiting (sometimes), and followed up with lots of urinating (as in a bladder full every 5 minutes for an hour). They did not occur often enough to be a huge hindrance until 5 years ago. I lost a lot of weight really fast. Everything I ate either went through me or came back up. I saw a neurologist, a homeopath, a rheumatologist, and finally a gastroenterologist who found through biopsy during an EGD that I have Celiac Disease. CTs of my abdomen and pelvis showed nothing. I began the gluten free diet and gradually got better, however I still had periods in which I would have these "spells" and then periods of remission. Recently: My "spells" have returned with a vengeance in spite of tests showing I have not been exposed to gluten. I have gained a lot of weight in the last year in my abdomen and face. I have been having periods every 15 days, severe abdominal pain, and bloating. I bought a new pair of pants 2 weeks ago (a stretchy size 14) and outgrew them in the waist in less than a week and I had not even washed or dried them since I wore them the first time (don't judge me)! My doctor drew hormone levels last year and I had high estrogen, really high testosterone, and almost no progesterone. Now I am growing hair on my face and belly. I recently have begun losing control of my bowels during my episodes (before I could hold it until I found a toilet). I poop (not diarrhea) about 5 times a day with no feeling that I'm finished. I can't eat very much at a time because I feel full almost immediately. Recent findings: I went to the doc recently and he ordered a CT of my abdomen and pelvis. While waiting on the results I had another episode (worse than ever) and ended up on an ambulance with excruciating right upper quadrant pain. An ultrasound revealed a 1.4 cm round mass on my liver. I went home and began researching. This morning I followed up with my doc and we discussed my ultrasound and CT results. The CT confirmed the mass was there and measured approx 1.3 cm hemangioma. After that I had to suggest that my doc do a 5 HIAA, but he agreed carcinoid could be the culprit. The problem is he's only seen one patient with one, so he really didn't know what to order (he thought it was a blood test). While I was waiting for them to draw a CBC etc I googled hemangioma of liver and carcinoid and found out that liver carcinoids can look like hemangioma a on a CT. My mom emailed the doc a couple of scholarly articles about it. I want some advice as far as what to do next, suggestions, anything you've got. There are no doctors here who think about zebras. Only horses. Please take me under your wing!

RE: New-need advice

by ahildenbrandt on Tue Oct 06, 2015 12:27 AM

Quote | Reply
Get a second opinion ASAP!, preferably from a doctor at a prominent cancer institution.

RE: New-need advice

by jesimesi on Tue Oct 06, 2015 01:45 AM

Quote | Reply
I would love to, but I have no insurance. It starts November 1st.

RE: New-need advice

by jesimesi on Wed Oct 07, 2015 02:53 AM

Quote | Reply
We have a plan! I called and talked to someone at Ochsner's today. We are going to stop all testing here to prevent insurance from denying future claims. After Nov 1st (when my insurance kicks in) we will go to Ochsner's for further evaluation/diagnosis/treatment. Someone from there is supposed to call me tomorrow to discuss details. I feel better having a sort of plan in place. It's just 2 weeks. I can do this.

RE: New-need advice

by badtothebone on Wed Oct 07, 2015 03:27 AM

Quote | Reply

Very good ,Its better to have all your ducks in a row first,good health,luck good will.

5 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.