Carcinoid tumors?

[Leahjf]

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!

[Leahjf]

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.

[Leahjf]

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.  

[CalGal]

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.'

[Leahjf]

I'm not sure.  My doctor said the least sensitive one was positive.

[CalGal]

Which were positive and which were negative?

[Leahjf]

Ok thanks for the tip. One of my Celiac tests came back positive but they rules it out because the other two were negative.

[CalGal]

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.

[Leahjf]

I just got tested for Lymes, ANA, HIV, and Syphillis.  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.

[patient915]

Do you have any other tests coming up?

[Leahjf]

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.  

[Leahjf]

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.

[patient915]

Good, I truely do hope you are on your way to figuring this out.

[Leahjf]

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!

[patient915]

Good, well I hope you figure it out soon.

[Leahjf]

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.

[Leahjf]

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.

[patient915]

Do you mean if it would show problems with your blood vessels?  Because most normal blood vessels can't be seen.

[Leahjf]

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?

[patient915]

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.

[Leahjf]

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.

[patient915]

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

[Leahjf]

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?

[patient915]

POTS usually has nothing to do with a change in blood pressure.  It's an increase of 30 bpm or more after standing.

[Leahjf]

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.