- Posted February 24, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
What Living With Stiff Person Syndrome Means
I was diagnosed with it on November7,2007. I had been having symptoms of it since July of 2006 and like most others I was misdiagnosed numerous times. I spent lots of time in the ER trying to get full body spasms to calm down with doctors telling me that there was nothing wrong with me.
I finally talked my family doctor into sending me to someone who could figure out what was wrong with me. He sent me to the OU Medical Center to a neurologist who had seen SPS before and he knew what test to run and diagnose it for me. I remember the day that his nurse called me and told me that my blood worked showed something unusual called stiff person syndrome and she set me up another appointment. I called her back a little later and had to ask her what did you just tell me. I started researching it on the internet just to find out it was a one in a million disease.
I was turned over to a neurologist that specializes in neuromuscular diseases.
I started out with the regular treatment of medicines that most people that have it take and started the ivig treatments I would still end up in the hospital every two to three weeks with full body spasms and would have to spend four or five days in it. This disease was robbing my life. I am the mother of three wonderful daughters. One who had just gotten married and the other two in high school when I was diagnosed. I had a wonderful job that I loved and people that I worked with that I loved. I have a great husband and we had been married to for twenty five years when I got the news. He has been my rock that has been by my side through all that I have been through.
SPS has taken so much away from me. We had so many things that we wanted to do when our daughters left home now we can't make plans for anything because I never know from one day to the next how I will be feeling.
I have to do plasmapheresis once every twelve weeks to keep my disease under control. This has helped me tremendously but you never know what is going to happen in the future. I used to have some really good friends but now I never see them. I can't buy tickets in advance to go to anything or even sleep in a hotel bed because I need to sleep in a hospital bed because I can no longer lay down flat because my back muscles are so tight.
This is what living with SPS is like for most of us some have it much worse than me and some less. I have a granddaughter now and I can't even babysit her by myself because of the medications that I take or the chance that I may have spasms while I have her. She is the light of my life and keeps me fighting everyday. I have made a lot of new friends from having a rare disease but I would rather have met them in some other way. I fight this everyday and will continue to do so. I have said that I would not let it get me and I plan on keeping it that way.