I have Syringomyelia. I feel helpless!

Im going paralyzed. This affects my entire neurological system, I now slur, stutter, have severe nerve damage in my extremities, shake, eyes twitch… Yet not 1 cure, no real knowledge and literally Drs sending me away because “my issue is too rare”. Im 39, Ill be in a wheel chair soon as I fall a lot, legs stop working, trip on air etc. Why isnt there anyone out there to help rather than let me die slowly and painfully? tears

Treatment for syringomyelia depends on the severity and progression of your signs and symptoms. Take an appointment with neurologist. Doctor can recommend surgery. Several types of surgery options are available to reduce pressure on your brain and spinal cord.

Avoid any activity that involves heavy lifting, straining or putting excessive force on your spine. Also physical therapist who have expertise in neurological conditions, may be able to create an exercise program for you that can help reduce your symptoms.

Have a health care team that includes your neurosurgeon, neurologist, a rehabilitation specialist and a pain management physician who can work together to create an appropriate plan for your situation.

Join support groups which provide a forum for sharing experiences and can be good sources of information, offering useful or helpful tips for people with syringomyelia.