Hello @modified82 Your symptoms sound like they’re progressing and this has to be very frightening for you. Your doctor had initially diagnosed you with ALS but now they’re not sure?
Have you considered a second opinion, maybe from a large teaching hosptial such as a university, or the Mayo Clinic? This may be a good time to have another set of eyes take a look and evaluate your situation. At least you would’t be feeling so helpless and frustrated about your care level.

This is a link to Mayo Clinic to request an appointment. http://mayocl.in/1mtmR63 It will take you to their main site where you follow the prompts as a new patient. There are 3 campuses in the US…Rochester, MN Phoenix, AZ And Jacksonville, FL.

Do you think this might be an option for you?