Hey all. My name is Andie, and I was told over the phone by a nurse yesterday that I have a 3-4 cm Colloid Cyst found on a CT that was done two days prior. That, sadly, is the extent of my knowledge other than what I've read online.
(I am 37 years old, I don't smoke, I weigh 158, mom of two teens, two dogs and a cat, and wife, diagnosed with Crohns 11 years ago and had one small bowel resection in 2008.) Two years ago, I trained a little and I participated in a 5k. I didn't run the whole way, but I did about half. Last year, I would walk/jog my dogs anywhere between 1.5 miles to 5.5 miles, every couple of days.

I had been experiencing tachychardia, shortness of breath, and extreme fatigue, and for the most part I blamed it on being out of shape. So when I went to my yearly dr appt in April, I mentioned it, and at that point I only noticed the tachycardia and other symptoms on exertion.

I did a stress test/echo, and that showed grade 1 left ventricular diastolic dysfunction, blunted blood pressure on exertion, and exxagerrated heart rate on exertion, but the doctors said it wasn't anything to worry about, and that it wasn't bad enough to be causing my symptoms.

I have been in the ER three times since May 4th this year, first was for severe between the shoulder blades which woke me up out of a very sound sleep, and was very very bad, and I felt as if I couldn't move. They gave me IV pain meds, and sent me home in pain without doing any labs or tests, and told me it was a muscle spasm. That pain didn't go away for at least a week.

Two weeks ago I was sent for a lung function test (to help determine the cause of my shortness of breath) and the technician wouldn't do the test because my pulse was 132, I had been having L sided shoulder and arm achy pain and tingling and she suggested that she walk me down to the ER. So I went. They did a full cardiac work up, labs were drawn and they found elevated d dimer levels, so that prompted a V/Q test or lung scan, to look for pulmonary embolism. While I was waiting to hear from the doctors, I got a severe headache, I had them turn off the lights, and both my husband and I told them, and all they did was hand me a couple of Tylenol while they were discharging me. The lung scan was normal, so they discharged me with no answers, EKG showed the tachycardia, but no heart attack, so they sent me home.

I got a Holter monitor last Friday, was supposed to do the test for 48 hours, and it turns out they programmed it for 24 hours instead. While I had it on, I had many episodes of tachycardia, so we'll see how that goes. I was told that it would take two weeks to be read.

Three days ago, I was at work and had an episode of tachycardia, and a co worker watched me and said my face turned white. (I have a pretty much sedentary job, so exertion isn't an issue.) My pulse was about 151. After I sat down for a bit, I called my doctors office, and the nurse suggested I go to the ER. So I went. I had my lung CT and Brain CT scheduled for that evening in the same hospital, so I figured I would not miss my CT's. My pulse went back into the 150's while sitting in the car on the way there, and by the time I arrived, both of my arms were severe pins and needles. My EKG was normal they said, they drew more labs, and started to give me a bag of fluids, but by then I was running very close to missing my CT's, so they hurried up and discharged me without talking to the doctor again and before my labs came back, and I had only even gotten about 1/5 of the fluids. I made my CT appts, and found out the next day that my white blood counts are elevated.
I have periods of nausea, tachycardia, shortness of breath, and weakness in my legs especially, but more and more all over weakness, and fatigue, but only occasional headaches. I have had what I thought were sinus infections, but now I am not sure. Everyday it seems to be getting worse. I have called my doctors office numerous times about my heart rate, and the last call (Tuesday) the nurse told me that I shouldn't be keeping track of my vitals because it can cause anxiety! But that was before the ct showed the cyst. Today I went home from work early because of severe weakness and nausea, my doctor is out of the office until July 1, and my symptoms are affecting my activities, my job, and it's scary. I feel as if I am a wet noodle, and when I walk I feel like my legs are going to give out. My biggest complaint during my stress test was the leg weakness and I felt as if my legs weren't getting any gas.
I have been given no instructions, no restrictions, nothing. I only know that I have been given a referral to neurology and to neurosurgery. I called the neuro surgery dept, and they said that appointments were based on test results and symptoms, and that I couldn't schedule an appointment for myself, and that there was a period of 2-3 days for the doctor to review my case. Which, this is a university hospital, one of the top in the us, and I have great insurance, yet here I am with a time bomb in my head and no directions.

Now that I know there is actually something there and I'm really not crazy, all of the symptoms I have been reading about online, I seem to have had or still have, and it all seems to make sense now. I just don't know what to do!! Should I go back to the ER for the nausea and weakness, or just sit here like a pile of jello until I get a call from a doctor? It's only been a day and a half since I found out, but now that I know about this thing in my head, all I can think about is to hurry up and get it out!!

Help!!

AndieB