I finally saw the spasticity specialist yesterday. I really liked him so will be putting off my Mayo visit for a while. He said that Baclofen has been found to be unhelpful in SPS, and is limiting the amount of Valium I'm able to take; which should be the mainstay of treatment.
His treatment plan is that over the next month I titrate off the Baclofen, with some small/moderate increases in Valium. Once I'm off the Baclofen, he said he'd be able to adjust the Valium accordingly so that we could get the symptoms under control.
In addition to this, he wants me to do physical therapy/water therapy, TENS, and get a better walker. He said, if necessary, I could get a GoGo scooter which is fairly inexpensive (in terms of scooters) and comes apart so it can be transported in a standard trunk. All-in-all, I'm feeling much better about my treatment.
It sucks that I have to wait to taper off the Baclofen, but until recently they've treated the disease similar to MS, so I can't really blame my neuro for putting me on it--everything I read led me to believe it was the correct decision, as well. The spasticity doc said he has one patient who found out the hard way that Baclofen didn't work when they decided to try a pump, so I guess I shouldn't complain about a one month delay.
In other news, the glasses had to be redone...my optometrist was initially stumped as the refraction came out differently each time he did it, but he said he's starting to see the full picture, kind of like the blind men with the elephant, as he put it, and thinks that each lens gets closer to my actual prescription.
I also got my BiPAP. The place my practice works with was unresponsive and then wanted me to wait a week for them to order a machine even though the doctor thought I'd be on it by the weekend. I called around and did manage to get it by the weekend--also found a great medical supply store in the process.
Really looking forward to sleeping tonight.