Reply To: SPMS

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itsmewithms
2 months ago

I have been reclassed from RRMS to SPMS and was kind of surprised to see it in my visit notes as we really didn’t address it specifically in my appointment. Basically the observation is that I haven’t had any new lesions popping up or any strange new symptoms but just a general decline in what I can do or symptoms just seem to hang around and not go away. It wasn’t like a big “you are here now” sign pointing to SPMS.

Some Neuros are really kind of pushing back on these “buckets” that we we are put in. Basically we just have MS and does it seem to flare suddenly (and go away) or does it seem pretty stable but still affect us and does it affect us in an increasing manner (progress). While I think the classes are helpful they aren’t that definitive or confining. Even if I am “steady” I still try to push against it and improve as much as I can…I just have to acknowledge it will be my effort (diet, DMT and exercise) and probably not aided by a wonderful MS Remission anymore. I will need to fight for what I get.

Dr Boster sums it up pretty good with his progression video and when he talks about the “leaky pool” model- https://www.youtube.com/watch?v=KcRWaOjOL2I&t=835s