Heriditary Sensory Neuropathy?

My daughter is 18 years old.Over the last four years she has had a slow progression of symptoms that at first were ignored as "growing pains"  that began in her lower back. Her spine specialist is baffled, her PCP has no ideas, her Chiropractic treatments give her temporary and minimal help, and she just started seeing and adult neurologist who is running tests.
She now has numbness, and tingling, palsy that comes and goes, debilitating pain that comes and goes mostly on her lower right side. She has no reflexes in her legs and diminshed ireflexes in her arms.She has had MRI's, bone scans, cat scans and some blood work,an EMG and we are not getting answers. They have put her on amitryptlyn, gabapentin, tremadol (and vicodin and oxycodon as needed when it is really bad) and she tells me that it gives her some relief. So far they have ruled out MS, a tumor, and tethered spinal cord. I have done alot of reading on my own and not really finding any set rule of thumb and how to diagnosis what appears to be HSN. Is there a definitive test or guideline that I could recommend to her doctor? She started collapsing at school, because her right leg goes numb sometimes without warning and now she is home and trying to somehow finish her senior year in HS in spite of these developements. Any direction would be appreciated.
PS. She also has these issues:
no bleeding menstrual cycle
diminished ability to sweat since birth
low IQ
low blood pressure
regular contstipation issues since birth
diagnosed infantile scholisis at 2 yrs. of age
rod implant in upper back at age 10
scoop and hardness in lower back
severe lower back pain