I actually find the MS Trust link above to be (unusually for the MS Trust) slightly confusing. It seems to equate secondary progressive with greater disability. And yet there are many people who are still RR (ie still have clear cut relapses with at least partial remission) but are really quite badly disabled.
The thing that jumps out as being crystal clear though is that you cannot go from RR to PP, you could just possibly be PP but with relapses (according to the Trusts leaflet) but if you have been RR then you could only progress to SP not to PP.
If you have primary progressive MS then it has always been primary progressive.
I still believe that many neurologists label their patients as RR for as long as they possibly can. If there is even a chance that you are having relapses and some remission, then only a diagnosis of RRMS gets you access to DMDs.
I’m really unclear as to whether a neurologist can look at MRI scans and decode them in order to classify you as being in one group or another. My neurologist is hellbent on getting me to have as many MRIs as he possibly can, but I can’t pin him down on why exactly.
Sue
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Thanks Sue. I’m agreeing with what you say here. Hubby and I have been dissecting the conversation with Neuro.
At the appointment Monday, when she said it’s ppms, she did actually say she’d thought so from the start.
My head was racing trying to take in all the information and implications. I asked her what made her think that, was it the scan report? She just said she knew from when I presented to her. My age, history etc. So I (we) have derived from this, that she believed it to be ppms, but to give me a chance, perhaps she erred on the side of caution and said rrms. That way I get to start dmt and be monitored. I made a great recovery from that at the time. Not so the last one in September and steady progression. Now, thirteen months later she can tell me it’s ppms.
I don’t think they can read scans and classify one type or another. When she told me that I’d had ms for “some time”, she wasn’t able to tell me how long, from the scan, only that they were old lesions. She is pretty wonderful actually. She listens to me, and I get to see her regularly. Since dx last May (mri), I’ve seen her Sept, Dec (mri), this week, and again next October, with an mri scheduled possibly for Dec.
So now, I’m telling myself it is, and has been from the start, ppms, but I’m sticking with Tec because you never know…
Thank you all so much for the support.