- CASE FILE
I have a very rare neurological disorder called Syringomyelia. It occurs in 8 in 100,000 people. There is no cure or real treatment. I need
ABOUT THIS CASE FILE
I've been diagnosed with a rare disease called Syringomyelia. Its very rare, with 8 in 100,000 people diagnosed with the disease. There is a cyst, called a syrinx, in my cervical spinal cord from the levels of c5-c7. This condition has ruined my life. Syringomyelia causes wide spread neurological symptoms including moderate to severe intractable chronic pain, extreme fatigue, weakness, numbness, temperature disregulation, paralysis, joint erosion, autonomic dysfunction, among many other symptoms depending the location of the syrinx. There is no cure or treatment for this disease. The cyst can not be removed. Doctors will insert a shunt into the cyst if a patient is experiencing symptoms of paralysis. This disease has taken me from being a nurse, happily married and very active, to being disabled, divorced and very emotionally distraught. I need help.