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@hmcampos 

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hmcampos

Brain / Spinal Cord MRIs

Hello all, Hope MS is not interfering too much with you day. I have had my DX about 3 years ago, multiple MRis, 2 DMTs and ever since no brain lesions. Neuro keeps telling me everything is OK and yet I do not feel all that way. Let me contextualize: 1) Never fully understood (accepted) why we rarely do MRIs to the Spinal Cord (SC) but rather brain only. 2) Despite no further brain damage after starting medication, I do feel losses in coordination and movement in hand and leg (not to mention the shock waves on my leg). 3) All of what I feel as worsening in my MS is SC related and controlled (hands and legs). 4) Neuro keeps telling me that neither from a clinical nor from a radiology point of view my MS seems to be evolving and SC scans are not needed. Now frustration is kicking in because I do read "a little" and sometimes reading is good to help opening new perspectives: https://onlinelibrary.wiley.com/doi/epdf/10.1002/acn3.377 The study pretty much shows a correlation doctors seem to be dismissing as non important, SPMS can come even if brain lesions seem rather stable. Or maybe it is just me thinking too much...but then again, I do know feel what I feel. Any thoughts are warmly welcome. H
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@Stumbler
@Stumbler
 

@hmcampos , as far as I'm concerned, MS is a progressive condition. So whether it's Relapsing/Remitting MS (RRMS) or Secondary Progressive MS (SPMS), it is still progressive. On this basis, the actual variant ceases to be of importance. As there is a lack of distinguishable relapse activity, it seems that the Tecfidera is doing a good job. Would you risk stopping this, by accepting a SPMS label? Does this help at all?

@hmcampos
@hmcampos
 

@stumbler, an opinion usually helps. Yours helps and brings emotions attached. The label indeed does not matter, what matters is what you stated...but with an interrogation mark. "Tecfidera is doing a good job??" I am not talking about stopping, I am talking (or writing) about improving the way we are diagnosed and therefore treated. I have the impression sometimes doctors do tend to be rather closed to new ways of seeing things. Again...I know what I feel, as we all do and sometimes I have the impression that is not related to what Neuro tells me. H