I'm not in the hospital nor do I have a terminal illness. I'm not raising money for health bills. But people often ask what is going on with my health and I also share on Facebook. I realize not everyone on FB wants to know the details! So I think it is best to share everything here. People can go back and read the history, get the updates, etc. as they would like.
In December 2016 I noticed pain in the knuckles of my left hand. In the following months the pain gradually increased and also started in my right hand. The joints (and tendons, I learned later) in both hands hurt and were stiff in the mornings. I started to lose strength in my fingers. Jars became more difficult to open and I started to drop things.
The symptoms seemed like Rheumatoid Arthritis. I saw rheumatologists, orthopedic doctors, a neurologist, a chiropractor, a physical therapist, and my family doctor. I had tests and x-rays. A rheumatologist told me he did NOT think it was Rheumatoid, but he didn't know what it was. Lyme's, Lupus, and other diseases were ruled out. The doctors couldn't figure it out and offered no direction to continue investigating. That is when I decided to go to Mayo Clinic in Rochester.
My first two days of appointments (September 2017) at Mayo were full! They scheduled me to see specialists in many departments, some of which seemed to have nothing to do with my symptoms. Mayo is thorough! I had x-rays, MRI's, an overnight sleep test, "women's" exams, urine tests and many blood tests. I even talked with a psychologist. I came back a couple weeks later for more tests.
In October, I went back to Mayo and talked with a rheumatologist about all the results. He said one of my tests (ANCA) came back positive. He hasn't given me a diagnosis yet, but his best guess is Granulomatosis with polyangiitis (GPA/Wegener’s). GPA is an autoimmune disease; a form of Vasculitis, which is inflammation of blood vessels. The mystery is that although my ANCA test was positive, I don't have most of the "classic" symptoms of GPA. (He also doesn't think it is Rheumatoid)
He prescribed prednisone for thirty days and wants to see how my body will respond. I will see him again this Tuesday, November 28th (rescheduled from the previous week). Although prednisone took away much of the pain, I'd rather not take it if possible. Long-term use has negative side effects.
I will write a journal entry on this site after my appointment.
Generally speaking, I'm doing ok! I know many people live with much more serious illnesses than this. I'm thankful for the privilege of going to one of the best medical centers in the world! So far my insurance is covering it. Some days I go for hours without pain! My fatigue has been increasing but is still manageable.
Thanks for reading my story! You are welcome to share my Caring Bridge site. I'm always open to feedback (about my health and about this site!).
About Vasculitis: http://www.vasculitisfoundation.org/education/vasculitis/
About GPA: http://www.vasculitisfoundation.org/education/granulomatosis-with-polyangiitis-gpa-wegeners/
Mayo Clinic: https://www.mayoclinic.org/
Breanna's Doctor: https://www.mayoclinic.org/biographies/warrington-kenneth-j-m-d/bio-20054903