Hi HD,
After reading your post the only thing I could tell you is my own experience in thinking I was getting better. I'm not in any way dxing the situation.
I think in my case it's a matter of finding the right cocktail of meds. As long as I take them at the prescribed times and keeping my body on them I feel like maybe I'm going into some kind of remission. But as soon as I skip a dose I begin to have an increased pain level reminding me that I'm still a CRSPy person.
According to my neurologist it's exactly as I feared. I'm probably going to stay CRSPy and on meds...