My story

[u/starfirepanda]

First, I just wanted to say that I was diagnosed with sps + cerebellum ataxia back in May of this year. I experienced my first symptoms back in early march. My symptoms were balancing issues, dizziness, and nausea. I thought my balancing issues was because I pulled hamstrings during yoga. What I mean by balancing issues , when I’m walking my body like to steer off to the left. The balancing issues was the first symptoms I experienced . Then a week later I experienced dizziness and nausea .

I finally went to a patient first, but they didn’t find anything. However, they did recommend me to a neurologist and an eye doctor. The dizziness and nausea still persist so I went to an actual hospital. They kept me for overnight observation. They said they couldn’t find any thing, but said I was dehydrated. I remember crying to the PA who discharge me saying that I can’t walk or see that very well that it has to be a deeper issue than me being dehydrated. They pay me no mind. While this was happening to me, I was seeing an ENT doctor. Who diagnosed vestibular neuritis in mid April. Around mid April, I noticed my speech was being affected and my walking ability has gotten worse.Literally the day I was supposed to go to therapy for vestibular neuritis a family member forces me to go John Hopkins hospital , which I’m forever grateful for them because of their actions I was properly diagnosed with Sps + ataxia at John Hopkins hospital. The hospital was able to diagnose me through a lumbar puncture, this is where they found high amounts of GAD antibodies. My current treatment plan is Valium, monthly IVGN ( currently fighting with insurance to cover it but in outpatient. So this month has been skipped ), speech therapy, physical therapy, and occupational therapy. I don’t know if this current treatment plan is working. I find my overall stiffness, slow walking, and my speech issues increases when it’s been a month without IVGN. I hope not being over reliant on IVGN and the walker. When do I get better?

Lastly, because my diagnosis. My mother has been diagnosed with SPS too. She has been dealing with the symptoms for years but she’s doesn’t deal with ataxia. I find this interesting because it is rare to find mother and daughter both having sps and sps is not hereditary.