If you've had issues for this many years, ALS would be very unusual. Not sure of your age, but ALS typically kills in 2-5 years.
Are you saying you think it's genetic ALS.? What reason have they gave for your need of a scooter? Do you have atrophy or only UMN issues such as weakness and spasms? That would be more in line with an UMN issue such as PLS or even MS.
since 2005 have they done no te sting?