My neurologist is thinking of referring me there, as I am undiagnosed. I'd be very interested in your experience. I'm new to this whole process. Kathy

Kathy, I would go it was a last resort for me and even though I didn't get as much info on my diagnosis as I liked at least I know I did everything available out there. My condition is very rare and you may be able to find out what is wrong and how to fix it for that it's worth it. They put you on a strict schedule from morning to night and plan on a week. But everyone is very thorough and nice, it takes awhile to get in but when they call you have to go. They also follow up with you when you get home and you can call with questions any time and they are happy to talk with you. It is an amazing place and if it can be found they will find it, in my case they gave me diagnosis but there is no cure so I live each day not knowing but knowing I tried. I wish you luck please keep in touch.

I have gone undiagnosed for 9 years. I even tried The Cleveland Clinic, but they weren't helpful at all. I had a bunch of tests and then i finally had to call them. they said, "Oh...everything is fine." It wasn't. I thought that the doctors there would talk to each other, but they don't. I have a bunch of strange test results and no one knows what they mean. At this point I just want to be able to plan for the future. Am i going to die? Will I need a nursing home in 5 years? It's only me so I have to look out for myself. But I don't want to waste money either. That's what happened to me in Cleveland.

Kathy, you have to have one dr that is your main caregiver who gets all reports who can set down and put things together. What about your primary care giver is he willing to do this if not find yourself a new one who cares. I am sorry you have had to go through this, trust me there have been times I was ready to just give up., but I have a very good internist who works with all my other Drs and he is my only one who prescribes for me.if you don't mind tell me what you have been through and were the results maybe we can compare notes and find something on our own to help each other because I too went thru years of I don't know what's causing it. Hope to talk soon. Linda