Hi my name is Carlie I am 23yo female with a long medical history who kind of defies the odds when it comes to rare diagnoses, so I am looking for some information.
I have been trying to get a dx for my worsening symptoms for the past year. Just in the past few months however, my symptoms have been chaning and getting worse. I have a dx of Polysystic Ovaries and an 8mm pit tumor whic was discovered by MRI in 2005.I had a repeat MRI in april of this yr and from what they can see it has not grown I also have had tourette syndrome since age 6 and at age 19 it got so debilitating I became a candidate for experimental deep brain stiumlation for my symptoms. It was a 6 hour brain surgery and has been very successful at helping to control my TS symptoms. My symptoms I have had for a while included daily headaches, serere flucuation in appetite cravings, blood sugar and blood presuure (not diabetic, cholesterol profile is awesome) fluid retention, rregular bowels and Tacycardia starting in 2006 which has been well controlled until the last week or so with a low dosage of beta blocker.
My new symptoms, a lot of which are cardiac related are extremely erratic heart rate even when staying in the same position varies 10bpm within 5 sec or so. and worsening tachycardia, which was under good contorl with the beta blocker. My max heart rate is (220-age) 197 and it gets to 160+ just bringing in the groceries or walking home from school. I also have developed cramps in my right hand, sharp pains in the middle of my chest which sometimes worsen with movement, and last night I got all freaked out b/c right before I got into bed I got this crazy pain in the right side of my upper neck sort of under my jaw, and I put my hand up to the pain and I could feel it pulsating. I am also developing spider veins in a pretty localized area on the outside of my right uper thigh that have never been there before. There is also tenderness with pressure on the right side of my upper abdomen below my right breast and I have worsening sensitivity to sunlight. I do not have diahrea, but have suffered with constipation for a long long time and am also on a LOT of meds that can make me constipated. I too have flushing with a small amount of aclcohol which is worse if I drink it fast. The thinkg with me is my face doesnt appear rd to others, it just feels to me like it is about to burn off. My body temperature also fluctuates rapidly and my palms are always clammy and sweaty even when they are cold. I wash my hands 10+ times a day becuase the feel so gross. I have also had more stompach upset/nasuea/indegestion, which I never had an issue with before.
My question is I know carcinoid tumors are supposed to produce excess seritonin, and I have been on an SSRI for OCD for 9 years (100mg Fluvoxamine 2x a day) and I was wondering what effect that woudl have on the tumor if there was one present. I know seretonin is like the satiety hormone that makes you feel full. My calorie intake is high, but I usually eat a large amount of food, usually sugar and then I can go 5-7 hours and feel fine before I get hungry again. So I eat a lot, but it keeps me full for a long time. Is this eating pattern at all typical with carcinoid syndrome??
What do you guys think? I have been tested for everything under the sun and every test comes back normal!! (so frusterating!!) and I think my endo is getting frusterated and starting to gently shove me towards the mental corner. I know better and I know there is something going on and I will not stop until I get a dx. it is to the point where it is interfering with my life. I cannot do the things I used to do without pooping out. I can't go shoppping, or go on walks, and I even had to drop one of my classes becuase after the first class I just didnt have any energy for the second.
Any opinions/input would be greatly appreciated...thanks!