What is appropriate physical therapy for MS? Who decides?

I recently stumbled on a compilation of a number of abstracts on MS and physical therapy collected in the 10/04 issue of the medical journal Multiple Sclerosis. Unlike most of the journal's content, this was available for free. Glancing at the abstracts, I started thinking about my own experience with PT.

My current neurologist suggested PT a couple years ago. I think we had been talking about ways to manage my increasing physical fatigue and leg pain; I don't remember exactly. He had specifically suggested going to the PT clinic that is affiliated with our local university hospital, where he practices and teaches. My HMO, however, has its own physical therapy clinic, located on the other side of town, and wouldn't approve the university PT clinic.

So I went to the HMO clinic, where I saw 'Frank,' a very nice Ph. D PT. At my initial visit we talked about my symptoms and history, and he moved my limbs about a bit to guage spasticity and flexibility, or whatever. He also bent my legs a bit to gently stretch my hamstrings. He then printed out a list of exercises to do and gave me a stretchy cord to use in performing the exercises. We scheduled another appointment a week later, and Frank told me to bring my swimming suit. One of the touted benefits of the HMO PT clinic's location is that it's inside this gigantic fitness club with machines and a track and a pool and 20 flat-screen TVs on the wall. So I showed up the next week and after stretching my hamstrings briefly, Frank and I went down to the pool where he showed me a number of exercises I could do in the water. And he gave me a card that let me use the fitness club for free.

For the next year or so, I did my home exercises (with diminishing frequency) and went across town to the fitness club (with diminishing frequency) to do the water exercises. Every three weeks or so, I went to see Frank, who would spend 10 minutes stretching my legs in various ways and then send me down to the pool. After a year, my referral ran out, so I called the HMO.

I asked if they would extend the referral; they gave me half a dozen more visits to Frank, but that would be the end, because they don't pay for "maintenance therapy." Would they approve a referral to the university PT clinic? No. So that was the end of PT for me.

Now, I'm having more trouble with balance and strength, and it's showing up in things like sometimes using my hands on the wall to steady myself while going around a corner, sometimes using an ersatz walking stick to help with balance, tending always to use my right leg to get up from the floor after yoga, and so forth. From the research I glanced at, PT has much to offer the MS patient.

Did I get what I should have got out of PT the first time round? Who decides? When can I try going back to PT, given the "no maintenance therapy" rule?

Link to free content from Multiple Sclerosis (free reg req'd?)
technorati tag: multiple sclerosis