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.
Good news. I hope it goes well.
Paws crossed this clinic has some insight! If y’all haven’t done so yet, check with the ME/CFS advocacy website to see if there’s any online support groups based around that clinic, so you have a patient’s perspective on what to expect there (there are several for the Tampa/Orlando specialists here).
Thanks! We are part of the clinic’s private facebook chat group, it has been helpful to talk with them so far.
Good Luck! Brad, hope they figure it out and find an appropriate treatment.
Both of you, the cost is insane. I’m glad you’ve got it covered. And I really hope you don’t have to wait until October.
I’ll be thinking of you both.
Thanks, we already got bumped up to September 24th!
Wishing all the best in this adventure. Oh the joys of medical paperwork.
Thanks! We love us some medical paperwork… NOT!
A very belated reply, BUT: I think that’s a picture of a handsome man that the late Dakota worshiped and has one of the MOST mischievous smiles I’ve ever seen – especially when he chooses to use it on you!
Brad, I know you have months to go, but I am so happy that you will get to see a Specialist – and maybe the great fortune to GET A TREATMENT AT LAST!!! I’ll keep the candles lit…
Thanks Deb! I love this pic of Brad!