My mom's doctor sent her to the Cleveland Clinic for an "official" diagnosis with an ALS specialist. She did not choose to get treatment there, however. We live in Toledo, Ohio and we have a local MDA here. (Cleveland is 2 hours away).
The doctor who looked at her spent about 15 minutes with her. He looked at all her tests/xrays/whatnots - read what the other doctors said - gave her the once over and announced that she had Bulbar ALS. That was it... That was in April 2007.
From the doctors to the nurses to the variety of therapists to "all those associated" with our visits..top notch! Very caring staff...from the initial visit until the final. Maybe it was just me/us (maybe it was just his diagnosis) but I maintained a very close relationship with each person I met along this journey. I cannot count the times that doctors, nurses, physical therapists, called me at home to answer questions and offer assistance. And, these were not "rushed" phone calls...they were sometimes very long - hour long - calls. I found email was a good way to stay in touch (as we lived more than an hour away from the hospital). I kept in constant contact (via office visits/phone, cell phone and email) with my husband's doctor and nurse clinician and even made contact with several of Jeff's other specialist doctors via email and got terrific responses. When I had a problem, I would email questions and photos of my husband so they could "see" what I was talking about. I even had one of his doctors email me with some advice while he was on vacation (I didn't know he was on vacation but he obviously still read his email and took the time to respond to me.) and he forwarded my pics to the respitory therapist who called the next day. Lisa and Shirley from the local ALS Society are wonderful to work with as well - and they are very closely involved with the ALS department at the Cleveland Clinic. If you have any other questions, please do not hesitate to ask.