"Mystery Diagnosis"…

September 23, 2007 at 10:23 am

Dear Bill,

Glad you made the show!!

In 2005, I went through the processes of being on Mystery Diagnosis too. I told the Story Director that it would be a true story; my story about my experience with GBS, then CIDP, and there would be no sugar coating.

I wrote my story, and the edited version was my wife and I was living happily ever after…NOT TRUE. PLUS I talked to all the doctors before she did, and explained this was going to be a true story, regardless of what their medical records showed (all four of my primary doctors misdiagnosed me)…And I did not get treatments of either IVIG or plasmapheresis, even when I became “totally paralyzed” and had to have a tracheotomy with a respirator to breath. Then, about two years later self-diagnosed my CIDP but didn’t get help from my doctors. I finally made an appt with a University Hospital, and they diagnosed me CIDP, and started IVIG therapy.

I was told “everything was a go”, but then did not hear anything for over a month (this was early Oct). So I called the Story Director and was told my story was put on hold because of their budget, but they had my story on file and if their budget allowed them to travel (I live in so Indiana – 13 mi NE of Louisville, KY) they would keep me in mind.

My guess – my story had too much truth of “what went wrong”, and the doctors may have influenced them not to produce…it wasn’t sugar coated. But that’s just my opinion.

Keep us informed. I will be looking forward to see you and your story, and what GBS information is released.

Best regards.