Help my Wife

My wife Danielle was diagnosed by a neurologist 3 1/2 years ago with a rare auto-immune disease called Stiff-Persons-Syndrome. This neurologist is no longer practicing in our area. Mayo clinic in Rochester has offered no options for treatment as well as Iowa City and Madison, WI. Some of this is due to complicated insurance issues. Current health is declining. Nutrition is a big problem as well as mobility. She walked with a cane at first, then with a walker and now with assist from another person or persons. She has severe spasms in her legs and sometimes in her arms and sometimes her entire body. She started having seizures about 2 years ago and the seizures have increased in frequency - sometimes 5 -7 times per week. The pain that results from the constant spasms is terrible (unbearable) and she is on a lot of meds - narcotics, muscle relaxers, and anti seizure meds. These meds are hard on her organ function. This journey in life has been very hard on our family, especially our childeren. My wife is only 40 years old.
There are no specialists here in the Midwest where we live that can help us. We have been to multiple doctors and facilities over the last 3 1/2 years and visits usually end up in disappointment because her case is so complicated. The doctors dont even know where to start. We have researched John Hopkins in Baltimore and they do have neurologists that specialize in this disease. We are tapped financially due to multiple medical bills over the last 4 years. It's not easy for me to ask for help. I have worked as a nurse in Dubuque, IA for 27 years and have been taking care of her as best as I can at home. We need answers and help but don't have the resources. I'm afraid that if we don't get help soon she will start to fail and then it will be too late. I want to be able to tell my kids that we tried everything.