Last reply 3 months ago
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
3 months ago

@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
3 months ago

@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


seanachai
3 months ago

hi @hmcampos

Its been said a million times I think, too much emphasis on MRI; patient feedback is crucial… and obviously symptoms and progression…

IMHO we really should have full MRIs each time, but for some reason Neuros don’t request it a lot…. it does tie up the machine for a good while for a full scan, maybe its that simple I dunno… but lesion can be anywhere in CNS…. so saying brain is good and that means MS is good is BS…

Are you having relapses or general progression ?


hmcampos
3 months ago

Thanks for your reply @seanachai.

I agree fully, specially on the patient’s feedback part. Full MRIs may not be an option as images will not be 100% reliable, I have been explained. But I take it patients wouldn’t mind doing brain + SC in separate hours / days.

As for why they do the brain MRI only it is due to the size of it compared to SC. Probability says lesions will happen more frequently in the brain fro RRMS. Not sure that story is 100% accurate but…

As for your last question symptoms are more as general progression, haven’t felt a relapse as before.
H

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