I know, I know, it has been a while since I posted anything. I thought I was going to have some great news and something fun to write about, but instead, things have been a bit of a downer lately. To catch you up, I need to go back to last month when I finally got to meet with a rheumatologist.
The Wait
The craziest part to me about the appointment was just how long it took. I got onto five different waiting lists, and so far, only 2 out of 5 have contacted me back. The one that I was able to get into first seemed like a nice place. They asked for tons of data to be sent over to them about my history and past tests. Leading up to the appointment, they also had me fill out some pretty complex forms that went over all of my symptoms and what I was experiencing. Friends told me that I should be careful not to get my hopes up too high, but I was honestly too excited to listen…
The Appointment
Things were still looking good as my wife and I got to the appointment. We had back-to-back appointments, and I was up first. I painfully went over my symptoms—and I say “painfully” because it’s really hard to talk about all of the issues without either getting emotional or focusing enough on the pain that it really starts to hurt. In this case, it was both, because I was having a rough week symptoms-wise, so I wasn’t sleeping well and was already in quite a bit of pain.
The doctor was great, and we spent a whole hour going over everything. In my head, I was like, “Wow, this guy must really have an idea of what is going on.” Boy, was I surprised when at the end, he wrapped up with a “Sorry, I can’t help you.” He then went on to explain, just as other doctors had so far, that my symptoms just didn’t line up with anything he normally sees and would know how to treat. Apparently, I am very good at getting classified as a “complex” patient, and some doctors aren’t that interested in my case.
The Aftermath
This appointment really left me in a slump. That day was a whirlwind of emotions, and I have been trying to figure out how to parse it in my head. That doctor at least gave me a recommendation to a specific doctor that I should see next. I am also going to circle back to some of my current doctors to go over what I have learned since seeing them. I am just so bad at dealing with the unknown, and I have to work hard not to let myself focus on it. The good news is that the next specialist they want me to see, a neuromuscular neuropathologist, has an opening next month, so I won’t be waiting too long. I’ve got all my fingers and toes crossed that they will at least have a clue about what is happening to me.