Well, it’s official, Brad is going to see a Chronic Fatigue Syndrome / Myalgic Encephelomyelitis specialist at the Hunter Hopkins Center in Charlotte! My parents are going to pay for it (they don’t take insurance) as my birthday and Christmas gifts. Brad’s birthday present to me will be that he fills out the 30 odd pages of medical history forms, collects his medical records yet again, and wakes up early to go to the appointment.
We’ve been on and off trying to find a doctor who is willing to treat Brad. He hasn’t really had regular health care since we lived in California 4 years ago. The docs at UCLA diagnosed him with CFS/ME, but as a “wastebasket diagnosis”. We needed a diagnosis to get disability, so they gave us that but told us to keep looking. I want to get the diagnosis confirmed, and get some treatment hopefully!
In the last 4 years, we’ve been to countless neurologists trying to get some answers with no luck. I have probably called a hundred doctors asking if anyone in our insurance would be willing to treat him with no luck. For a while we thought we might have an ally in his PCP, but she seemed to lose interest pretty quickly. Most recently I’ve been trying to find doctors up to 2 hrs drive away to treat Brad, but no one will call me back, or they aren’t taking new patients.
That’s when I decided enough is enough! There is a highly respected CFS/ME clinic in Charlotte. They don’t take insurance, and charge $430 an hour (intake appointment is 3-4 hours!!!!), but they are well acquainted with the illness and might be able to give us both a solid diagnosis and some treatment options. I am done with not knowing.
The clinic is so popular that there is a 6 month waiting list for a new appointment. Our appointment is scheduled for October 16th. We are on a waitlist for cancellations since we live so close and can get there in a hurry. Hopefully we’ll get Brad seen soon and start getting some answers, or at least a shot at some treatments.
A special thanks to Nancy and Tamara who gave me a kick in the pants to get back on this doctor search after our convention ended. And to Linden who helped me figure out how to pay for it.