Last reply 7 months ago

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.

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7 months ago

@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.

7 months ago

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.

7 months ago

I feel a rant coming on. It’s a well documented known fact of rebounding activity when stopping Gilenya and starting treatment as soon as the wash out period has finished is the new protocol.

You can come back from this lesion Load is not the only factor in progression. Keep going with your self care . Wishing you well your trying for a baby

7 months ago

Ps sorry to repeat mmhhpp

7 months ago

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