Why the PET scan? Because the doctors want to be sure that it is porphyria causing all the pain my Mom is having. They do not want to believe porphyria can be so painful. It must be cancer, it must be a tumor, it must be something they can point to on an Xray and say AHA! There it is.
A spiral CAT scan showed a miniscule spot on the lung. Too small to tell if it was cancerous, they decided to have the PET scan give it a look. The newest toy available, it http://www.alcase.org/education/detectio... provides much more detail than the MRI or Xray http://www.intelihealth.com/IH/ihtIH/WSS... It's usually used to check for cancer, brain disease, or cardiac illness. It is not used to look for porphyria. Which brings us to the question: How many tests do you need?
The standard urine test tells you if you have porphyria, at least acute intermittent porphyria. Then there are the blood tests, they tell even more. Technology may have advanced, but our understanding of the pain associated with porphyria hasn't. There are so many symptoms that come with this disease, that it sends the average doctor running to the textbooks to see what kind of test he should order.
I am grateful for the advances medicine has made, and I'm sure these new scans are wonderful for finding cancer, but the fact is porphyria is still misunderstood and misdiagnosed http://ncchem.com/safe-arbor/underdiagno... by all but the most determined doctors.
In the words of Mom, "How do you get off this merry-go-round?"
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