- Posted January 26, 2014 by
Missouri City, Texas
This iReport is part of an assignment:
Living with a rare disease?
Stiff Person Disease, Living a New Normal
When I was 17, I began having joint pain, I would think I sprained my wrist, knee or ankle. Over the next few years, I was taken to the emergency room for shaking, joint pain, muscle stiffness, and all over sick feeling. The ER doctors would give me fluids, and usually come up with the diagnosis of dehydration, heat exhaustion and my favorite,-anxiety attack. Sometimes I would feel better after fluids and then other times I would feel bad for the week following. I was constantly feeling tired, achy in my joints and muscles, nauseous, dizzy but I kept working.
In 2010 I joined the Army, while in basic at Ft. Benning, GA, I was totally exhausted but thought it was just the training. While running, I was becoming stiff, having a hard time breathing, 2 fellow soldiers literally dragged me into the medic. I was medically discharged from the Army in Dec. 2010, not because of Stiff Person Syndrome, but due to Pectus surgery I had in 2004.
While working in law enforcement in Kansas in 2011, I felt bad with same old symptoms. Dr. began running CT scans, lab work, and x-rays but never came to a conclusive diagnosis. Then while working in Oklahoma as a police office, I began to have trouble walking, my hands didn't work well to write reports. My wrist and hand trembled and shook as I held a gun. I lost my job in September and moved to Texas to live with my parents. They began taking me to their family doctor, who sent me to a cardiologist because my heart rate seemed high. My walking was getting worse. My granddad died and while at his funeral, my aunt noticed I was walking funny. In November I began to walk like "Herman Munster" very stiff legged, then my toes started curling up, which I call "elf" toes.
On November 26, 2012 my parents drug me to the car, because I couldn't bend my legs. They took me to the ER, after 2 hours the ER doctor checked me into the hospital and called a Neurologist. Forty-eight hours later and a CT scan, spinal tap, electromyogram, blood tests all done, the Dr. says we have ruled out MS, MD and Parkinson, but I think it could be Stiff Person Syndrome. I had never heard of this, nor had my family. At this point my legs were moving like I was doing jumping jacks in bed. My arms would flail back and forth. Theseepisodes lasted for hours, I would be sweating like I was running a marathon, my heart was racing also. My Neurologist decided to send me to a bigger hospital with the Chief of Neurology that had been his teacher. I was transferred on day 8. I was becoming stiffer and my arms became affected. I couldn't eat, brush my teeth, nothing. The pain was horrible, no one could even touch my bed, let alone me. On December 19th my blood work came back from Mayo and my GAD65 count was 63.5. I had a chest cath put in to do Plasmaphersis 3 times a week. I didn't feel any better. On January 3, 2013 I had a Thymectomy, where they learned that my Thymus gland was active and enlarge. A normal Thymus gland begins to atrophy and stops working in your late teens, my had not done this. I was recovering from that open chest surgery and still having plasmaphersis. On January 31st I had Baclofen pump surgery. All this time I am still not feeding my self or using my arms. I was taking Valium, IV pain killers ,Cymbalta, Robaxin, and Fentanyl Patch.
On February 8th I was transferred to TIRR Rehab hospital. I was so nauseous and ill, and was still in so much pain and could not be touched. The doctors told my parents there was nothing they could do to help me, since they couldn't do any therapy due to the pain. They were going to send me home, with a hospital bed, a motorized wheel chair and a hoya lift to move me from bed to chair.
On February 15th while laying in bed late at night, I know that God came into my room and I could feel Him touching my legs. This was a miracle that I know happened in my body. The next morning I could lift my arms and wave my hands, and I was able to bend my knees which had been straight for almost 3 months. The therapist, nurses, and doctors were amazed at the difference in me, I began doing the therapy, and with each day I grew stronger. I was able to use a regular wheel chair. After 107 days in the hospital I finally went home.
I still have spasms, pain and have Plasmaphersis every 3 weeks. I still take 12 pills a day, and am pretty much wheel chair bound. I have accepted this diagnosis, and trust God for each day. My parents are wonderful and help me everyday. I know this is not what they expected in their empty nest years. I really want to raise awareness of this 1 in a Million Rare Disease, so that more research can be done and cure can be found.