PET scan - will it tell me what I need to know - Open to All Other Health Topics Message Board

brownowl · 12-17-2006, 01:00 PM

Hello:
For the last 3 years I have been fighting with what is causing a fever I have. The only consistent things have been high WBC, high sed-rate, very high CRP, low-grade fever. Now over the past 4-6 months I've had a pain in my right side and back. I actually feel some lumps on the right side. I've had blood cultures, echocardiograms because all of a sudden my blood pressure went up and the heart rate have gone up big time -- heart rate is now at 146 So, they've got me on Toprol and Altace -- the blood pressure has gone down, but the heart rate is still high. They did this thing called a gallium scan -- they ended up scanning me 4 times because they were trying to see if what they were seeing would move, it didn't, but they didn't know what is causing it. All they said that it seems ok, but they had detection in the lower right lung and liver on the right side. Could this be causing my fever, they don't know. I've been seeing an Infectious Disease doctor; however, she is not convinced this would cause a fever. And, the doctor that read the gallium scan recommended a thing called a PET scan. The Infectious Disease doctor did not want to do the PET scan because she said sometimes the tests can give you more things than finding the cause. Finally, they said that I should have the PET scan; however, now I find that the PET scan company says that insurance does not cover "Fever of Unknown Origin" as a coverable test. Should I pursue this test or not -- I'm feeling worse and at times it is really painful to breathe. I'm confused and scared at the same time. I want to know, but then I don't want to know. If you know what I mean. Over the past two weeks, I've gotten really tired, I sleep, but I'm still tired and sometimes it feels like I've got to sit down or I'm going to fall down. This only makes it even more scary. Has anyone ever experienced this and what could it be?

DX- · 12-18-2006, 06:33 AM

Bronowl,

I can see how this would confuse you -- because it's a mix of emotions with the practicality of expense. We can't give you an answer, but maybe make a few suggestions.

First -- do some research on exactly what a PET scan is, when a PET scan is indicated, what the benefits will be, and potential drawbacks. Don't just listen to someone's quick explanation, and don't read just what the manufacturer says about it. There are several websites listed in the beginning websites sticky at the top of this board.

Next -- see if you can find someone who is in a similar boat to you -- someone who was having trouble getting a diagnosis, and who went through a PET scan to learn more. You won't be able to get info about your own situation from such a person, but you'll be able to learn more about the process itself.

Once you have a good handle on what it is and how it can be helpful, sit down and make a list of pros and cons. A pro might be that it can get you closer to a real diagnosis -- or -- that it will eliminate another diagnosis. But a con would be, of course, that you'll have to pay for it.

Weigh your results against what you're thinking in your "gut". Sometimes our intuition is telling us things, and we have trouble tuning in to it. And sometimes wishful thinking gets in the way. If you honestly think you won't know much more, and you'll have spent a fortune for little or no more knowledge -- that's one thing. If, however, you will feel more empowered by learning more, then go with your "gut." The answer won't be the same for everyone -- it's an individual thing.

Best of luck to you.