I had previously mentioned that I was on a wait list for an appointment at a university with an autonomic disorder department… They figured I’d probably get in for my first appointment this summer because they were so backed up. Anyways, my mom and step dad had planned a trip to come out for a week to visit us. A few days before they arrived, I got a call from the University of Washington in Seattle telling me they had a last minute appointment with one of the neuromuscular doctors I’d been referred to, if I could make it, first thing in the morning on the 2nd. I can’t deny that God had something to do with the timing… Family would be here to help and I was getting stuck in one of my hopeless, dark moods. This had to be a win.
We live about an hour from Seattle, depending on the awesome traffic here (I-5 anyone?!)… So instead of stressing myself into an episode and rushing there very early Monday morning, the grandparents got us a hotel and we made a little trip out of it, including a bit of fun in Seattle. I was very nervous about my appointment, to say the least. After seeing so many doctors who can’t figure me out, I’ve come to expect let downs, a lack of answers, and throwing in the towel (or just more diagnoses without explanations to add to the list). Of course, I know that isn’t a “healthy” attitude or outlook, but I’ve never really been a glass half full kind of girl.
Anyways, I made it to the appointment. It was just like a normal doctor’s office – I don’t know what I was expecting?! Some fancy *insert your favorite medical show here* setting I suppose. I met with one of the resident doctors (the slaves) and discussed my symptoms and health history for about 30 minutes. He took some notes on a way-too-small piece of paper that ended up resembling a corn maze of sorts… I think I should have warned him about my physician phobia and brain fog – I can’t focus or stay on track very well. So the concise and chronological list of symptoms I had planned on providing just turned into word vomit. Even when I bring a written list for them to read though, they want to “hear it from me” unfortunately. The damn pupils came to the rescue though! He was sufficiently intrigued by those and left for about 45 minutes to go talk to the head honcho.
This cat just really understands me.
After nearly peeing my pants (for real… fortunately I found the bathroom and made it back before the doctors thought I’d escaped), the resident and head honcho came into the room. She briefly went over my symptoms before performing her own physical exam. She noticed I had reflexes that were a bit stronger than normal, cold hands and feet, and difficulty feeling a pin poking me, especially on my feet. Then we moved on to the pupils – lights on, lights off, lights on, lights off. To start with, she ordered full autonomic testing (including another tilt table, which sucks but it is what it is). This is a link to information about autonomic testing done at UW. Dr. Oakley is the autonomic expert at UW and I hope I can see him at some point. Let’s see, she also ordered a lower EMG (nerve conduction test), and some blood work that was sent to Mayo to check for specific antibodies. The blood work included: Paraneoplastic autoantibody panel, Lyme disease antibodies, and Angiotensin converting enzyme (ACE). I’m certainly no expert but from what I’ve gathered, the paraneoplastic panel (PNP) checks for antibodies caused by cancer – often from tumors that are too small to be found by other modalities but are causing neurological problems in the body. However, I’ve also read that the PNP can find antibodies not caused by cancer that can be responsible for Dysautonomia… Such as Autoimmune Autonomic Ganglionopathy (although the PNP only picks up about 50% of individuals with AAG, so you can be seronegative and still have it). The ACE test was to check for a condition called Sarcoidosis.
All of my tests came back negative. Which is probably good, it rules these things out – to an extent. I wasn’t hoping for any of these tests to be positive. The search for an answer wears me down pretty heavily though on the emotional front. I am fortunate to have loved ones telling me to keep up hope and push for answers… They really believe UW will figure this out and I want to believe that too. So that’s it on the testing front for now. More to come soon!
I also want to encourage people to ALWAYS get your own medical records and read them for yourself. I had X-rays done for the arthritis in my lower back in September and just now found out I have scoliosis. It’s mild but these are things providers should tell you about your body. Every time I get my own records, it seems that I find something that was never discussed with me. Boo.