@amos13 

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amos13

Relapse

I was diagnosed in 2014 and was taking gilenya since then. My neurologist said that as I had been stable and was considering a family that it would be fine to stop medication for up to 6 months- if I didn’t conceive in this time period she planned to start me on copaxone. I stopped medication, then 2 and a half months later I started to develop new symptoms - issues with my legs that I had never experienced before. I went straight back to the neurologist. I explained my issues, She didn’t seem to be concerned and told me to start taking Copaxone. She didn’t request any mri at this time. 2 weeks later I broke my ankle, 2 months later I was in hospital with steroid infussion as I could no longer walk at all. The healing broken leg was actually stronger than the good one. The MRI taken in nov 2018 showed 40 new lesions (not a typo and not counting spinal lesions) the previous mri was done in Feb 2018. I am now very angry at my neurologist for not doing an mri when I was first showing signs of new symptoms. I have gone from going for hour long walks with my dogs daily, to using a walking stick and maybe able to walk a block. Anyway, with Physio and time I hope I will regain what I have lost. Just wanted to share this story in a warning to push your neurologist if they don’t seem so worried - as we know our bodies better than anyone else. If you feel that something isn’t right it’s ok to question the specialist.
@Stumbler

@amos13 , a good lesson to highlight. We do have to be our own advocate, pushing for the right levels of attention and the treatment we want. Thanks for sharing.

@mmhhpp

Omg! I am furious, it is well lknown the rebound effect when stopping gilenya. I have been though that. If this neurologist does not get it find another one . In my opinion cladribine alemtuzumab hstc worthwhile looking into it.