MS symptoms changes/evolution

Hello all,

I am wondering how everyone MS evolves? So far with what I have read I was under the impression that it mostly about relapses/apparition of new symptoms.
I am experiencing something different which is a slow but contant worsening of my symptoms from my first (or second not quite sure from scans) attack. All is located on the left hand side of my body. Also, in the last few months I have noticed very small pains/changes to my right side to similar pain spots on my left side.

Is this ā€œnormalā€? I understand everyone experience MS differently but I am wondering.

It sound like a case of Smouldering MS and quite normal for us MSers.

Smouldering MS - a new trial - by Gavin Giovannoni (substack.com)

2 Likes

Thank you this info. I never heard of smouldering MS before. Very informative.

Yes, I agree. It’s not terribly good news, but it does help make sense of some stuff.

1 Like

Well, I’m no medic but I’ve never quite accepted the ā€˜relapsing - remitting ā€˜ model with no activity between relapses. Tend to think that the immune system is always ā€˜nibbling’ away at the CNS and over time, especially when the immune system is fired up by an illness, stress , physical injury etc , it causes significant damage, and again over time, that damage is sufficient to cause noticeable symptoms. I knew about smouldering lesions which I suppose reinforces my thinking. So, for me, the challenge is to keep as fit and healthy as possible and do everything to help my brain keep healthy and able to at least try to repair MS damage - diet, exercise , meditation, relaxation and avoid stress.

2 Likes

Iv had transverse miyalitis on the right side and it just hangs around even after my relapse. Kinda smouldering …could be sudo symtoms .just hanging around have you started dmt ? Im starting ocravus hopful might help duno im in the same situation with symtoms hanging around .hope things get better or settle down for you …

2 Likes

Yes, I definitely experience lingering and worsening symptoms.
I am not on any treatment yet but gathering info to start soon.
Good luck with Ovacrus - let us know how you are doing!

1 Like

This makes a lot of sense. Thank you!