- CASE FILE
I'm disabled I can't get Medicaid or medicare. I wanna help othere with my disease.
ABOUT THIS CASE FILE
Stiff person syndrome is 1/1 in a million. I started with neuro lyme disease. Then got SPS which is an autoimmune disease. It's very rare. I have tried the max oral dose of balflcan which is 240 mg a day. It stopped working. Soma doesn't work. Tizanidne gives me little relief. I'm on cymbalta got nerve pain . I have had a spinal tap which had (H) protein and 3 Ogli bands. My GAD antibodies are high which is how you get the diagnosis. My EMG was normal. I have spinal pain in between my shoulder blades. I have muscle spasms. I have them so bad in my kidney area that it gives me anxiety attacks. I'm disabled and get $1414 a month so I dont qualify for medicaid and there is a 2 year wait for Medicare. I want to do anything I can to keep anyone else having to go through what I have been through the past 4 years. I have a chest port as I was receiving IVIG for lyme brain lesions which were going away but my insurance ended so I had to stop treatments. I'm willing to do any treatments or procedures to get help. It would be wonderful if someone knew more about this disease while I'm still walking!