Anyone diagnosed with Plexin D1 autoimmune small fiber neuropathy?

Is there anyone out there that has been diagnosed with Plexin D1 Autoimmune Small Fiber Neuropathy? I was diagnosed a couple of years ago and my symptoms are getting worse. I was hoping someone can give me ideas on how to better manage it. I am looking for anything big or small. I have tried so many different things. No cure for this. I was just told that IVIG is not really an option as the cost is so high and of course my insurance company won't cover it because it is investigational. How do you live with symptoms. I'm 60 and if it is bad now what will it be like when I'm 70? Sad, frustrated, feeling defeated. Thank you.