1 year later, no diagnosis

Mom looking for support...It's been a little over a year since all this started. 2 hospital stays each 1 week long. First both hospitals showed results positive for scleroderma, (and internal type) and then the rheumatologist said no, the lab even with them being positive is not, it's all false. 20 year old daughter screams in pain, has severe cramping in muscles, stabbing needle like pain, overall weakness with more on her right side. Vision loss and pupilary delay on the right side. Hearing loss, on the right side. She went from perfectly healthy to needing a walker and sometimes a wheelchair. She has had mri scans, ct, xray, labs, labs, and more labs, tests, and doctors have given up. They suggested we go to Cleveland Clinic in Ohio, which we will be going to in October. She has so many tremors that it's hard to even eat, if she has an appetite. She is using liquid iv. And meal replacement shakes with some food. She has done PT at home, swimming with a life jacket all summer. Her balance just has not returned. She has severe eye pressure which needs a neuro opthamologist, and we will be getting tests on her autonomic nervous system. Coming from Texas and driving that far to the Cleveland Clinic appears to be our only hope for a diagnosis. Has anyone else had to watch their 20 year old young adult child struggle?