Spasticity specialist
 

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.

I'm glad you are making progress!

Me too! I am glad things are looking better. Are things improving on the work and home front too? Has your boss stopped hassling you on your recovery plan?

Getting a good nights sleep always helps to put things in perspective. I hope your progress continue.
kathie

Thanks all. I think the slight bump in Valium has helped quite a bit. I'm able to get around better, but now my muscles are killing me because I'm actually using them. Good news is he told me I could tweak it as needed and I had a tour of a warehouse facility today so I took slightly more and I ache a little less. Can't take much more until I can get off the Baclofen, though.

BiPAP seems to be working. Only problem is that despite the apnea being moderate, they had to crank the machine up to almost maximum and use a full face mask to get effective results. Everything seems ok except the pressure on the bridge of my nose. I'm trying different types of pads, but will exchange the mask if need be. I think if I can find a good pad that still allows it to seal, I'll be in good shape.

My boss is actually being pretty understanding. He still wants a schedule of which days will be telework days...he doesn't seem to understand the day-to-day nature of this disease. He did seems genuinely concerned about my leave situation and doesn't want me to get into a whole that will take forever to dig out of. He's also given me some projects that I can work on from home.

My glasses, unfortunately, are being redone, which doesn't make things much easier, but I really need to get back to work and show that I can be an asset to the team now that everyone has come back and I'm finally getting projects I'm capable of.

Its a lot to take in, but I think I'm heading in the right direction.