This is a snap shot, of just the start of one of my spasms, which lasted for a few hours.. It is a recording taken by my husband in London Hospital Queens Square during my admission in October 2012,. It was requested by one of the leading Consultants to help correlate my symptoms.
This video was taken before i began to embark on my journey of Plasma Exchange. What you see in the video is nothing compared to how it progressed. My husband had to stop filming because he needed to assist me through my pain as it progressed, and prevent me from choking. I was denied my medication, i was denied any help. if you listen carefully at the end of the recording, you can hear me trying to communicate. begging for Madasilam , as this was the medication prescribed for me by a consultant who visited me at home from a local Hospice. Jason and i were very wary about using this drug, However , as my lungs become rock solid during spasm, i am literally suffocating.Therefore , it was used to help relax the spasm, it worked very well when needed, At home i was prescribed liquid Madasilam, for Jason to rub into my gums and also in the form of sharps. During a spasm, my jaw is affected, along with the whole of my body from head to toe . Therefore, Jason would carefully rub a small dose into my gums, because i am unable to open my mouth or swallow during a spasm.
On request for my medication , the doctor said NO. They made me suffer for hours, the spasm becoming more aggressive . It feels like every bone is breaking, every muscle being torn apart, my internal organs so badly affect by such server contractions affects my heart lungs, even my brain and skull, feeling like i am being crushed in side.
I am a prisoner in my own body
How is that possible ??? Stiff Person Syndrome x