Wow...your case sounds very similar to my husband's. I'm so sorry that you are going through this -- we understand completely the frustration. My husband is 43, presented with weakness in upper extremities, neck flexion weakness, hoarse voice and difficulty swallowing. But, his legs are strong and he still has full fine motor skills in his hands. Walks, bikes, rides his motorcycle, works, etc. This has been going on for almost 2 years. We also have received different diagnosis, including MND most prevalently.
We are now at Columbia University's neuromuscular clinic -- started the evaluation process on 8/29 and still going through lots of testing (just today had a spinal tap.) Unfortunately, they are repeating many of the same tests already done by other neuros -- now have had 4 EMG's, 4 MRI's, etc. This is frustrating for my husband, but on the other hand, we are pleased that Columbia is pursuing every diagnostic tool and avenue available to them. I read in your post that you are trying to get out-of-network approval to go to Columbia. We hope you can get this -- they have given us confidence and hope that they will figure out what is going on. Be prepared, though, it takes awhile to get an appt., and then the process can be lengthy. Good luck -- please keep us posted on your progress and we will do the same.