Well, today we had the first appointment with the stiff person specialist. He said my diagnosis could be a variety of things ranging from dystonia, SPS, or something medicine doesn't even have a name for yet (just my luck). Dr. McKeon said that I definitely have aspects of autoimmunity in my system based off my elevated antibody titers, so he is recommending a trial of IVIG, regardless of what he finds. If I manage to stump this doctor too, I don't even know what to think. I had a mini meltdown due to being hormonal from PMS and that wasn't pretty, but I was definitely not happy being subjected to the exact same tests for the second, third, even fourth time (especially because they aren't exactly painless). No one seemed to understand that except for my friends with chronic illnesses and I can't possibly expect any healthy people to get it. It just doesn't work that way. So yeah, I pretty much melted down. I am a bit ashamed of it, but if anyone else walked a mile in my shoes, they would be melting down too, so...
My mom and I were both frustrated by the lack of any definitive information from the doctor. It was very confusing, wishy washy, and created way more questions than it answered. I didn't come to Minnesota to leave without answers, so I hope this guy is as good as they say he is.
Using logic and medical knowledge, dystonia should be ruled out because it does not have an autoimmune component (and I don't respond to its treatments). CRPS also has no known autoimmune component. So in my black and white mind, it's either stiff person syndrome or an autoimmune movement disorder yet to be discovered by modern medicine. We will just have to see what tomorrow's full day of testing will bring.
Signing off from the Mayo Clinic in Rochester, MN!
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!