Jeryl S.

My story started in 2016 with double vision and eye movements. I went to the neuro ophthalmologist who suggested fixing my problem with Yankee my glasses down over my nose! So much for seeing him! The issue continued and I went to a neurologist who tested me for myasthenia gravis. That came back negative.

After multiple neurologists, MRIs, infusions of IVIG, pheresis, two lumbar punctures, only one neurologist could come up with cerebellar ataxia. I finally decided to pursue another neurologist with a much more prominent presence in our Detroit area. She ran several tests and agreed that it was cerebellar ataxia, but recommended a genetic test to confirm the type of cerebellar ataxia. The test result that came back was Spinocerebellar Ataxia type 17.

I suffer with vertical nice diagnos, constant balance issues, tremors, and jerking motions with my SCA17. The neurologist that did the genetic testing referred me to a movement disorder doctor, also within the prominent health system in the Detroit area. He has been thorough, understanding, and open to performing other tests that might be needed. After 9 years of testing doctors, infusions etc I finally have a diagnosis!

While it is certainly not what I wanted to hear, I feel blessed that God led me down this path to know what my problems are. No cure is available for this ataxia and I live in a senior independent facility with care if I need it. I use a walker all the time and I’m having physical therapy to help with balance and walking. I am in total support of anyone that suffers with this disease and it has increased my understanding for others..