For the last 5 years, I have been searching for an answer as to why my ankles get inverted and locked in the position for months at a time due to muscle spasms, rigidity, and more. The mystery diagnosis to which we refer to as Otto, mimics many of the Stiff Person Syndrome (SPS) that all these doctors say I have. Previous treatments like ketamine and epidural lidocaine infusions have failed to quiet Otto down the last few years.
When I was at the Mayo Clinic, they did 5 days of IVIG, steroids, and benzodiazepines which broken the cycle for 2 months before some symptoms came back full force on 6 months later. Conveniently, all my doctors dropped me like a hot potato, right as I started to start my downhill slide again. My feet turned in, my legs started giving out again, and I ended back in the wheelchair again.
I have called neuroimmunologists and neurologists all over the country trying to get them to take on my medical complex and confusing case. I've finally found a few doctors willing to try, but I won't be able to see them until like March-August 2017. Much better than then January 2017 appointments they were trying to give me.
Until I have the SPS (Otto) diagnosis, I have to play the hurry up and wait game with the medical system. Hopefully, often I have a diagnosis, I can start treatment immediately to stop the progression of the disease and perhaps turn back the clock enough for me to walk.
The last couple of months have been challenging trying to prove to doctors that I am sick enough and that I am worth treating. Sounds wrong, but that's just the way it is.
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!