I started writing this yesterday, but have learned something new today. This was where I got to yesterday:
‘These labels that are attached to our various forms of MS bug the hell out of me. When is SPMS not SP? And when precisely does RR migrate to become SP? How on earth do the neurologists justify SP with relapses? Is it not still RR but with disability progression?
Can we not find a more efficient way of demarking our various versions of MS? Yes, there’s the ‘Advanced’ label, which many people think is a good way of describing more severe disability. But that then doesn’t really do it properly. And supposing you have relapses but are SP, is it possible to qualify for DMDs?’
Then I saw my Rehabilitation Neurologist today. He gave me a new way of describing progressive with relapses: Active Progressive. We were discussing my recent relapse and the stunning recovery I’ve had. Amazingly some symptoms that I’ve had for the entire 7 years I’ve been seeing him have improved following a recent relapse, and a course of steroids. One thing that I thought was impossible was that my foot-drop has marginally improved. He said he’s never seen that happen before after seeing hundreds of patients with foot-drop. He has agreed with me that there’s definitely been a relapse and suggested that DMDs would potentially be helpful. So I said I might find it hard to have them justified (after having been labelled as SP), which is when he came up with the notion that neurologists are starting to divide progressive into ‘active’, meaning there are definite periods of inflammation, and ‘non-active’. Which could mean that a neurologist might find it possible to get a DMD prescribed.
So he had already done an MRI and noted 2 new enhancing lesions, thus giving clinical evidence of inflammatory activity, thus a relapse (or even two as I’d a couple of months before noticed symptoms of what I’d thought was a potential mild relapse). He had already referred me back to an MS specialist neurologist who is able to prescribe DMDs (which he can’t). Today he’s even more convinced and is writing again to hopefully bump me up the queue a bit.
Are there others with the SP label who still have relapses? Anyone been described as Active Progressive? And has anyone with SP then been prescribed DMDs following further inflammatory activity?