The story of Andrew

     Hello, my name is Andrew, and I am a 24 year old male from Morgantown, West Virginia. I don’t really know how to begin except to say that nothing is for certain in this life. For example just two weeks ago I was attending college walking to and from classes and now I can barely make it to the bathroom. I suppose I should start at the beginning to explain how I got here. 
     I was in the kitchen making dinner with my room mate when I suddenly became very unsteady. The best way I can explain it is that the solid floor beneath my feet started to feel like water, I know this sounds crazy but I could feel this coming from my brain as I was rationally telling myself that the floor hadn’t turned to water but was in fact rather still a solid form of support. But to my dismay my body reacted as if it was standing on water and I fell and hit my head really hard. Shortly after my head hit the floor my spine started twisting backwards uncontrollably. My friend and I thought that I was having some type of seizing episode and called 911. 
     After getting to the ER and going through concussion and stroke protocol I was admitted to the tenth floor which is the nuerology floor. While on that floor I experienced something I have never before in my perfectly healthy hospital free life have never experienced before. I was experiencing stiffness of all my muscles while still having uncontrollabe muscle spasms so hard I thought my spine was going to break. They administered some type of medicine to help with the spasms which gave some relief but not much. While I was able to hold myself the right way they continued test through the night into the next day. After they finished my testing with the last test which was an EG they diagnosed me with Stiff Person Syndrome (sps). 
     The next day they started treatment or IVIG and after three days of treatment I was able to take my first step with two people holding me up. I continued to build strength until I was discharged going from having to be fed to walking on my own in a week and a half. And now we are caught up.

    Like I said before nothing is for certain in this life. All we can do is take it a day at a time and try to do the best we can with what we have. Keep your head up.

 

*Find others with Stiff Person Syndrome on RareConnect, the online platform for people affected by rare diseases