The story of Anne
On New Years Day 2016 I woke up with pins and needles which wouldn’t go away. I tried to ignore them but they appeared to get worse as the day wore on. I went to A&E in the afternoon and although I walked in there, by the time I was called to a cubicle I had lost all strength in my legs and couldn’t walk. An MRI showed that I had demyelination on my spine and I was diagnosed with Transverse Myelitis, a very rare condition. After 8 months I didn’t seem to be making much recovery so my consultant ordered further tests and it was found that I had a glycine receptor antibody in my blood. Also, the electrical muscle tests were performed, an electromyography and Nerve Conductive Study. These showed unusual activity in my muscles. One year after my initial illness began I was re-diagnosed with an even rarer condition, Stiff Person Syndrome.
I am now undergoing treatment to try and regain some movement in my muscles. There are treatments available but I know now it’s more a case of stopping the progression of this condition.
I am still wheelchair bound but I can stand for short periods. I get really bad muscle spasms which are incredibly painful. The demyelination has left my central nervous system damaged and I suffer constant neuropathic pain. I still have the pins and needles that were my first indicator that something was wrong.
Thank you for reading my story, please help to raise awareness of these rare diseases it means a lot to us that suffer.
Connect with other people living with Stiff-Person Syndrome – RareConnect.org