Just wanted to update that yesterday's blood patch was worth getting up at dawn for -- the head and neck pain disappeared by the time I woke up from the light sedation the doc administered.
The only odd part is apparently they had a lot of trouble getting blood out of me for the patch. I was lying on my stomach, face down like on a massage table, and my arms dangling off the sides of the table. My last memory is of one of the nurses tying my arm to aid in getting a blood sample, and the anesthesiologist saying the vein in the center of my right elbow looked like a likely candidate.
I'm always a little challenging to get blood from, but there are four needle marks in bend of my right elbow, two on my right wrist and two to three on my left wrist. I've got huge, horrible bruises on both wrists, which are a little sore and I've been icing.
Meanwhile, I'm learning yet again the benefits of social media. I'm on Facebook and Twitter, like the rest of the world. (I'm very dull on Twitter and don't use it extensively.)
But yesterday, someone I didn't know sent me a tweet asking if I was familiar with the National Institute of Health's Undiagnosed Diseases Program. I'd never heard of it, but luckily the guy gave me a link and wow! I've already printed out the letter to physicians so I can take it with me when I see my internist next week. It's a lot of work for her, but I'm hopeful she'll agree to do the referral I need.
If I'm accepted into the program, the costs of meeting with lots of top doctors and doing whatever tests they want to run is free to me, and the program might even pick up my travel costs. And while they make it clear that they cannot guarantee a diagnosis for every patient in the program, it seems like if I'm seeing doctors who specialize in rare and/or difficult to diagnose diseases, I stand a better chance of getting a diagnosis.
Cross your fingers for me, everyone! And if, like me, you've got a mystery illness, follow the link for the program and consider asking your doctor for a referral for it too!
4 months ago