The story of Michelle
Up to the age of 19 I was like a steam train that couldn’t be stopped. In February of 1999 I was diagnosed with Mono and it was taking me longer to recover than it should. Since I was in the Air Force I forced myself to push on.
That same year I ran the Tuscon marathon. I came home tired and sore but didn’t think anything about it but my muscles started staying stiff and I was having muscle spasms in my feet, calves and upper back.
Doctor after doctor would say it was “sports injury” and told me to take it easy. I was referred to psych and was told I was just malingering because I was home sick.
Eventually a doctor diagnosed me with chronic muscle spasm of unknown origin and I was prescribed Klonipin. The pain and symtoms became more manageable but didn’t go away.
Fast forward to 2005. I woke up in the middle of the night and couldn’t move. The pain was excruciating and my legs were bending in ways I didn’t think was possible.
Again I jumped on the Doctor carousel except this time with my husband who reassured me I wasn’t crazy. The third Doctor I saw diagnosed me with polyneuropathy.
On a routine visit to my GP he was listening to my lungs and noted the stiffness. He asked if it was always like that and I said yes. I was referred to an orthopedic surgeon who did MRI’s of my full spine, there were only about 4 discs in my spine that were not crushed, demylated or bulging.
I met with my first neurologist in 2007. She happened to be my father’s neurologist as well.
She noted that I had been diagnosed with chronic muscle stiffness and polyneuropathy and knew right away I had Stiff Person Syndrome.
In the years that have followed the SPS has progressed. I spent almost a year bed bound and now have to use a wheelchair because I can’t stand up right for more than a few minutes.
I have a new team of Doctors at Vanderbilt University hospital as I have multiple autoimmune and rheumatalogic diseases as well as several sleep disorders.
I don’t want anyone to feel sorry for me just to understand me. The anxiety and depression that come with SPS have me completely home bound right now and I just want people to understand why and not just take offense to my absence.
I will continue to advocate for Stiff Person Syndrome, Rare Diseases and Chronic Illness as long as I can.
Find others with SPS on RareConnect, the online platform for people affected by rare disease
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