Okay so long story short is that I am undiagnosed (11 years), uninsured, and almost penniless. i recently found an actual doctor's office (not a clinic) that could provide in-depth diagnostic care for the uninsured. It is one of only two or three in the entire state, and I don't qualify for the other two. So this is the only place I can go. I have been going to this place for a year, and i have seen two separate doctors here that agree that the diagnosis could be vEDS.

After another huge hassle, I found out that the test I need to diagnose me is the Marfan/TAAD panel, offered only by GeneDx. The cost is $1,500 out of pocket, as I am uninsured. After yet another huge hassle, an entire team of people (myself included), worked together to raise the money. From there, (and after another huge hassle), my doctor's office received the test kit they needed for the test.

What's left to do now is for my doctor to complete the paperwork. It's called the Cardiology Test Requisition Form.

But there's a catch. My doctor has never seen paperwork like this before . . . he is "just" a primary care physician. He is not a specialist, and this is a rare test, so his inexperience with it is expected. So he has to call the lab and get help finishing the paperwork. So at the end of my last appointment on July 18th, he said he would call the lab and get help finishing it. From there, I could have the blood drawn and shipped back to the lab, potentially changing my life forever.

And ever since that day, I have been bending over backwards trying to get an update on my paperwork. i have lost track of how many hours I have spent calling every number I have, emailing, and researching. Every time I call, either no one answers, they tell me to call back later, they say it's "still on his desk," or I get some other run around. I got no reply from the emails i sent. I do not understand why it's been a month and he still hasn't finished three pages of paperwork.

I just got off the phone with the lab, and the rep confirmed that there is nothing on their end that would cause delays.I just don't get this at all. being undiagnosed didn't stop me. Being uninsured didn't stop me. Being penniless didn't stop me. But three pieces of paper just might.

I even contacted a local GeneDx rep, and she went to my doctor's office personally to see what she could accomplish. She was unable to get anything done.

I am at my wit's end with this. I do not know what else to do. i don't know who else i can email, call, or ask. I do not know what is taking so long for my doctor to complete this paperwork. And I cannot go to a different doctor for the reasons I explained above.

Does anyone have any suggestions for me? I am in Georgia if that helps.

Thanks.

Edit: Not sure why my comments are getting downvoted. If you look at some of my comment history, you will clearly see why I cannot just "get health insurance" and "assume I have EDS." If you don't want to do that or don't have the time, which is extremely understandable, i re-explaned everything via my comments . . . which got downvoted. I could have been blatantly sarcastic and rude. I could have said, "Gee, I wish I had thought of that!" or "What do you think I have been trying to do for the last 11 years!?" I could have resorted to name-calling and accusations. Hell, I could have downvoted, too. But I didn't. I explained why /u/heroow was not helpful. I am just trying to take a few steps forward while my circumstances push me ten steps back. End rant.