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Carcinoid tumors?
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Carcinoid tumors?

It started in February when I kept getting bouts of tachycardia even though I have very low blood pressure.  I have been getting hot flushing sensations on my chest and face for a few years now and it mainly only happened when I was drinking alcohol, so I just ignored it. Now it happens pretty much constantly. I have had abdominal pain as well for a few years and also ignored that because I did not have insurance up until a few months ago.  Now my abdominal pain is horrible, my eye sight is getting worse by the day, I can't eat very much because it makes me nauseated so I have lost 15 pounds within the last month.  I get head aches which I have never had before, the veins in my hands and arms bulge sometimes, I get very dizzy and confused a lot, and I have had black stools on and off which leads me to believe that I may have a carcinoid in my small intestine.  I have decreased hearing in my left ear, with numbness on that side of my face.  I had this painful lump on my forehead by my left eye that I popped with a needle because I thought it was a pimple, but after I popped it, my pupils started to dilate and my heart started beating hard.  That's another thing that makes me think I have carcinoids. I have had several tests done, but they have all come back negative: MRI of head, TSH levels, my glucose was a little high even though I was fasting, but my DR. just disregarded it. It was at 100.  I've had my eyes checked by 2 opthalmologists and I've been to an ENT which was a joke because after I told him the symptoms about my ear he just looked into it and it was clear, so abviously I don't have an infection, so he just said it was TMJ.  I think after I popped that thing on my forehead, the cancer spread to other parts of my face including the nerve for my ear.  I have had a 24 hour urine test for catecholamines, an electrocardiogram, and a holter monitor.  My first Dr. said that I had PVST, but I later found out that was a lie from an electrocardiologist.  My original Dr. just kept telling me I'm a hypochondriac and put me on Lexapro which is making my symptoms worse which also points to carcinoids because of the excess serotonin making the liver harder to process it since with carcinoids there is already too much of it. My feet and hands are always cold and fall asleep very easily.  I have lower back pain and went to a chiroprator and he said my spine was straight, but when he took an xray of my lower back, he saw white spots all along my colon, which were probably my vitamins, but he thought it was weird that they weren't being digested. I have a gastro appointment tomorrow, so hopefully I get some answers because this is really frustrating!!! Any suggestions as to what this might be would be very much appreciated!
Thank you!
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Avatar_f_tn
Welcome to the gastroenterology community!  I think it is incredibly unlikely that you have a carcinoid in your small intestine.  It wouldn't give you most of the symptoms that you are describing.  If it had dramatically spread (therefore possibly causing your other symptoms) you would be having a lot more serious problems and your MRI would be abnormal.  What other testing have you had done?  Have you had a CBC (complete blood count)?
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Thank you.  The MRI I had was without contrast, so I don't know if it maybe wouldn't pick up things that were small.  I'm not sure if I had a complete blood cell count but if I did it was normal. I have an appointment today so I will ask.  What other serious symptoms would I have if it had spread?  I just feel terrible all the time.  After I popped that pimple thing on my face, I couldn't even get out of bed for a few days, my heart was racing and I literally felt like I was dying and I couldn't sleep.  Every morning when I wake up a feel nauseated and I feel like I am going to puke but nothing comes out.  I just hope the Dr's figure this out before it's too late.
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Avatar_f_tn
My point is just that if you had a carcinoid in your small intestine that had spread enough to be causing all of your other symptoms, you would be having a ton of blood in your stool, you would be getting lots of fevers, passing out, and in general just be a lot sicker.  I know you feel very sick right now but I'm talking about symptoms that people have when they are close to dying, not just feeling crummy (but I do understand how terrible you feel).  Popping that pumple thing on your face had nothing to do with cancer; that is not how cancer spreads.  I would recommend making sure you have had a CBC.
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3093747_tn?1344658683
Okay, thanks.  I really do feel horrible all the time, and if I burst a tumor, how would it not spread?  I appreciate your advice, I just know there is something seriously wrong with me, but my Dr's haven't figured it out yet.  I can barely get out of bed most of the time. I just want to feel better.
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Avatar_f_tn
Cancer spreads on its own, not by pressure/puncture on it.  That was not a cancerous tumor that you popped.
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3093747_tn?1344658683
Okay, thank you.  I hope that is not the case, but can't cancer spread more readily if a tumor bursts?  I had my gastro appointment today and the Dr is testing me for Celiac's disease.  I mentioned carcinoids to him and he said it is a possibility, so I guess I will find out after my colonoscopy.
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3093747_tn?1344658683
Okay, thank you.  I hope that is not the case, but can't cancer spread more readily if a tumor bursts?  I had my gastro appointment today and the Dr is testing me for Celiac's disease.  I mentioned carcinoids to him and he said it is a possibility, so I guess I will find out after my colonoscopy. .
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Avatar_f_tn
Also, tumors won't really "burst".  Your symptoms do not fit with cancer.  You need a CT scan of your abdomen or a small pill (pill cam) study to rule out a carcinoid in your small intestine.

I think you need to stop worrying about cancer. All of this worrying and panic is not going to help your symptoms.  When you start thinking about it, try to think about something else by reading the newspaper, doing a puzzle, or watching tv.
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3093747_tn?1344658683
From what I have read about carcinoid it seems like I have every symptom.  I hope that's not what I have, but I don't know what else it could be.  I know I shouldn't focus on it, but it's hard to take my mind off of it when I feel like this.  At my appointment today, I found out I lost another 5 lbs in 4 days! I went from 155lbs to 135 in a month.  It's really scary.  I hope it's just Celiac because at least I could manage that.  Thanks for the advice, I appreciate it.
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3093747_tn?1344658683
Oh and I stabbed the "tumor" with a needle and all that came out was blood, and my eyes have been red ever since and I have been getting headaches after that too.  So I wouldn't say it burst, but it was punctured and I had a black scab on it for a while.  My left eye hurts too and is getting worse.  It looks like it has new veins growing in it too.  The bump that I popped was the same color as my skin and it was hard and sore and I had it for about a year.  The reason I popped it was because when my eye sight started getting worse, I could feel some kind of vein coming from my eyesocket up to the bump and it wasn't there in my other eye.  I know I sound crazy but I really think the bump has something to do with my eyes being blood shot and not being ablt to see. Like maybe the tumor vascularized from that bump to my eye.  Now I'm getting another bump right next to it.  And when I popped the "tumor" my eyes started to dilate and my heart rate was super fast which leads me to believe it was filled with a hormone that would cause that.  I know you probably think I'm nots but I'm just telling you what I felt and saw when I did that.
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Avatar_f_tn
I truely do not mean to offend you, but you are over-thinking this and over-researching this way to much.  The chances of you having a carcinoid tumor in your small intestine that has spread all over your body giving you these symptoms in incredibly slim.  Check if you have had a CBC (you most likely have; this is one of the most commonly done tests).  If your CBC is normal (or mostly normal) I think that you and your doctor can comfortably completely eliminate the possibility of a metastasized carcinoid tumor in your small intestine.
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3093747_tn?1344658683
Okay, thank you. I truly hope that is not the case, but I feel completely horrible all the time and it is getting worse.
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Avatar_f_tn
I know the feeling.  For a long time I had all these symptoms that seemed unrelated and we couldn't find a cause.  I eventually was diagnosed with an autonomic neuropathy/dysautonomia which means by automonic nervous system doesn't function properly.  This "caused" severe gastroparesis where my stomach is basically paralyzed.  I have been 100% fed into the J portion (into my small intestine) of a GJ tube in my abdomen for over a year and I have a tunneled IJ line (central line) in my chest to receive medications and magnesium.  My point is that there are many many different things you could have that all have many symptoms that don't seem to fit together.  Obsessively focusing on one possibility is only going to cause you more worry and stress, which can definitely worsen your symptoms.
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3093747_tn?1344658683
I'm sorry to hear that.  Thank you so much for the input.  I know that it could be a bunch of different things; I just want it to get solved because I hate feeling like this.  I just want to get better because this is ruining my life.  I have my gi appointment tomorrow, so I'll let you know what happens there.  Thanks again.
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Avatar_f_tn
I hope the appointment is helpful, keep us updated!
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3093747_tn?1344658683
My appointment went well today.  My dr said everything looked normal but he took a few biopsies just to be safe.  One of my celiac tests came back positive I'm just waiting on the other three. So I will keep you posted. Hopefully it's just celiac, but I don't know where all the other symptoms would be coming from.  
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Avatar_f_tn
It could be celiac.  Because it is an autoimmune condition, it can cause almost any symptom.
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3093747_tn?1344658683
I just hate that no one can figure this out.  My eye sight in my left eye is getting worse and my eye hurts.  Also I have decreased hearing in my left ear.  And I don't know how that could be related to celiac, but I really think it is related to popping that thing on my forehead.  How did they finally figure out that you had dysautonomia?
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Avatar_f_tn
I don't think there is any symptom I can think of that I would say is NOT caused by an autoimmune disorder (ex. celiac).  Those symptoms you are having would definitely be rare for celiac disease, but I don't think it would be unheard of.  You can try asking your questions about celiac disease on the celiac disease community.
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Avatar_f_tn
My mom (who is a doctor) and I noticed that all my symptoms were related to the autnomic nervous system.  I would get a fast heart rate, my eyes would become dialated, my face would become very flushed, etc.  We made an appointment to see a cardiologist who specializes in POTS (which is one of the most common forms of a dysautonomia).  She did a poor man's tilt table test (taking blood pressure and pulse laying down, sitting, and standing), and from that concluded that I have POTS.
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Yeah I saw an electrocardiologist and he had me sit down and stand up a few times while monitoring my blood pressure and he said that I didn't have POTS.  I think it's possible that I may have an autoimmune disease though because I get bruises all over my body without getting hurt and I get weird rashes sometimes that itch. My veins also bulge a lot, which may be vasculitis. My skin is also very weak and thin, like I took a bandage off and my arm started bleeding and my skin peels easily.  I'm just so stress out about all of these symptoms I'm having because it seems like the doctors are never going to figure this out because I have too many things going on at once that they don't know where to start.
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Avatar_f_tn
POTS usually has nothing to do with a change in blood pressure.  It's an increase of 30 bpm or more after standing.
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3093747_tn?1344658683
Oh really?  He was just checking my blood pressure when I stood up and sat down.  I'm just really scared because I want to get this figured out and the doctors can't find anything.  It's really frustrating and I feel like giving up because I can't afford to keep going to the hospital.  How old were you when you found out you had POTS?
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Avatar_f_tn
Yes, most people with POTS have their blood pressure remain mostly normal when going from laying down to sitting to standing.  I was 17 when I was diagnosed with POTS.  Here is a good article on POTS:

Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising.

http://www.ninds.nih.gov/disorders/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm
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3093747_tn?1344658683
That does sound like a lot of what I am going through.  Some of the symptoms I am having do not fit though.  Today I started getting an itchy rash on my arms and hips.  I haven't changed laundry detergents or anything like that, so I don't think it's an allergic reaction to anything.  Do you think that could be something autoimmune related?  I know you probably think I'm nuts but after I popped that thing on my forehead I started getting these little red dots all over my body, especially on my neck and chest.  I don't know what the hell is going on with me but I hope I get some answers soon because I seriously can't take it anymore.
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Avatar_f_tn
Yes that could be autoimmune related.

My opinion would be that there is something you have that caused you to get that thing on your forehead that also caused you to get those red dots.  I don't think the popping of the thing on your forehard had anything to do with the red dots on other parts of your body.
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Well they started showing up right after I popped that thing.  And that week I had really bad night sweats and couldn't sleep.  Also I had this really oily discharge pouring out of it when I would lay down for bed.  I can barely hear out of my left ear now and it's really red inside, but it's clear so I don't have an ear infection.  I'm just so scared. I don't want to die, but I feel like I am.  I get really bad headaches on the left side of my head and I'm really dizzy. Also my left lung hurts when I breathe in and I get chest pains on that side.  I have a lacy kind of rash on my upper left arm with red dots in it too.  And my left eye hurts and the vision in it keeps getting worse.  I get double vision sometimes.  Do you think my MRI without contrast would show blood vessels or no?
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Do you mean if it would show problems with your blood vessels?  Because most normal blood vessels can't be seen.
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3093747_tn?1344658683
Yes.  I just went to the dr today and told him about my ear and eye, and he wants to do an mri with contrast, so hopefully I get some answers.  I just hate that what ever is going on with me is effecting my whole body so it's basically impossible to figure out or it is going to take years to get figured out.  I really appreciate you talking to me about this.  Everyone I know just thinks Im nuts and making it up but I'm not I just want to get better.
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I got my results back for celiac and they were negative. I also had biopsies from my small and large intestine which were all negative which I am very greatful for. I am doing a 24 hour urine test to see if I have carcinoid. Another possibility of what's causing my symptoms could be mastocytosis.  I guess I will have to look into getting tested for that now.
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Good, well I hope you figure it out soon.
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3093747_tn?1344658683
Thanks, I will keep you posted.  One of the urine tests I am taking tests for histamine which could indicate mastocytosis, so hopefully I get this all figured out!
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Avatar_f_tn
Good, I truely do hope you are on your way to figuring this out.
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3093747_tn?1344658683
Thank you. And again, I really appreciate having someone to talk to about this because no one around me is being very supportive; they say it's all in my head, but all the symptoms I have could not possibly be in my head.
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All of my urine tests came back negative which I am very thankful for.  I just wish I could get this figured out.  My eye has been bothering me a lot lately.  It hurts and I feel a lot of pressure behind it and a lot of pressure and pain on that side of my head.  
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Do you have any other tests coming up?
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3093747_tn?1344658683
I just got tested for Lymes, ANA, HIV, and Syphillis (syphilis).  All were negative.  I had an MRI with contrast and my maxillary sinus is thickening for some reason.  I still get really bad headaches and I get double vision in my left eye.  It feels like my brain is bleeding because I feel fluid in my head.  I get clicking noises in my ear and all of this is on the left side.  My face goes numb on that side sometimes too.  I am losing my memory and I get confused a lot.  I have no idea what is going on with me but I am going to see an infectious disease dr to talk about the possibility of Lymes because I have a lot of the symptoms but I know you can get false negative results from the typical testing they do.
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Avatar_f_tn
Leah, which tests for gluten issues were done? Were you checked for non-celiac gluten sensitivity? That can be a problem even when celiac isn't found and some of your symptoms sound like it's a possibility. You may want to consider giving a gluten-free exclusion diet a try for about 3 weeks and see what happens.
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3093747_tn?1344658683
Ok thanks for the tip. One of my Celiac tests came back positive but they rules it out because the other two were negative.
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Avatar_f_tn
Which were positive and which were negative?
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3093747_tn?1344658683
I'm not sure.  My doctor said the least sensitive one was positive.
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Avatar_f_tn
Leah, each of those 'celiac' tests can tell you something if they're viewed correctly. Forget the fact that one is more sensitive or not, get the list and look at it. Also make sure you get a readout of when they tested your total IgA levels, not IgA-gliadin. That total IgA number can also be indicative of what's going on. Docs are good, but when it comes to dealing with food intolerance or celiac disease, there aren't a lot of docs that know much about the subject unless they've work with it a long time.

It's really a new and emerging field and a lot of the medical profession has to 'catch up.'
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Okay, thank you.  I am going to contact my drs and have them give me all of my results from all of the tests I have had.  
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Hi how have you been?  I recently found out that there is a lesion on my cervical spine which can explain some of my symptoms.  I am seeing a neurologist now, but still have no idea what this lesion is.  I have to wait a month to see if it grows.  MS has been ruled out which I am thankful for.  The lesion still doesn't explain the symptoms in my eye and head, but hopefully I can get some answers.
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