I got the test results back yesterday from the ultrasound, the two days of 24 hour urine tests, the plasma blood work, the heart ultrasound.
I showed up to the cardiologist office 30 minutes early. I was eager to hear the results of why this blood pressure and other symptoms have been so wildly out of control.
I was called back to his office. I sat down and waited for him to come in. He entered the room and sat in front of his computer.
Now, he isnt the most warm and cuddly MD I’ve ever met. He doesn’t make much eye contact. But he has a reputation of being one of the best.
He opened up his screen and stared at it. And said, “hmmm… took a breath and said hmmmmm again”
He said, “Well, I’m puzzled. I have results but I have never seen this before so I am waiting for a call back any moment from the endocrinologist”
I said, “ what? What do you mean puzzled? Can’t you just read up on it and let me now what it is? What’s the lab result?”
I was trying to act calm and normal. But felt awkward and curious to know more this minute.
He said, “you have all normal lab results except one that is very unusual. “
Right then a call came through before he could tell me what it was.
After the call he explained the normal range for 5-HIAA is usually 6 and my lab value was 40. It requires to be seen ASAP by a specialist.
He went on to say some other things but all I really heard was “a very rare situation”.
OMG! Again?? What the HElL!! I don’t need another rare disease! I was thinking.
So, it could very well explain a lot of symptoms, but I will find out more on Monday at 8am.
But, I feel grateful that this MD has been thorough to keep digging until he finds out what has been causing the high blood pressure, sweats, flushing red face, and the extreme anxiety all night.
I always feel that there is good with almost all news. This ‘rain’ I am experiencing will be a good thing. We will get to the root of this and flowers will bloom. All will be fine. That’s just the way the world rolls.
I will keep you posted.
Stay healthy my friends
I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.