Reply to "Upset - maybe misdiagnosed and biologics concerns"

Yes, thanks Scott. Even the Rx literature says the same. Such a basic thing.

Doctors don’t like the internet for educating ourselves and this doctor said talk to the experts in her office rather than what I read on the internet .....as though I wasn’t going to talk to them. It’s about advocating for ourselves and I’m frankly annoyed today that much hasn’t changed in decades.

I was told they haven’t seen Promethius results that indicate pattern inconsistent with IBD when there’s a clear history. Then there’s the lab that didn’t even run the test until I called directly myself and learned they had a system glitch.

Finally, I was initially told yesterday by the PA that an MR Enterography was not warranted since the small bowel series was clear. Today I get a call that the doctor wants it done. I’m quite certain it never would’ve come up had I not learned about the test on this board.

Heck, I had multiple doctors send me away with no answers for 13 years until I discovered the word pouvhitis on this board.

This seems basic stuff that specialists should be on top of without the patient internet education they are quick to shut down. 

/rant 

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