sugaplum 13/03/17
Last reply 11 months ago
MRI results and Lemtrada

Hi
I was hoping some one might be able to help with my query. I have had two relapses in the last year, weakness in my legs for the first one and a sensory relapse in my legs for the second which was numbness and awful nerve pain. I currently take Tecfidera and my Neuro suggested I start Lemtrada which I agreed too and I am waiting for ms nurse to ring me to arrange this. My Neuro also requested a brain MRI which I have had and the results have revealed no new changes since my last brain MRI in 2015. The relapses I had were proper relapses and I still haven’t recovered fully so I’m confused and I’m concerned now I won’t be able to have Lemtrada because of the MRI results. Anyone else experienced this or any thoughts on this? Anything would be appreciated

Thank you
Em

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marcyg921
11 months ago

Your Neurologist wouldn’t have suggested a change in treatment if they didn’t feel it was best for you, when I was told I was to go on Lemtrada I also had to get an MRI, the results were that there were no new changes. I think the reason they want to do an MRI is so they can compare it in the future to make sure the treatment is working.


tracyd
11 months ago

@sugaplum

It’s likely that they were active lesion which have previously been mapped causing the relapses. It’s rare that when we feel a relapse start that they can just sling us in an MRI machine instantly and go ‘ohh look there it is’ ….. by the time it happens usually months later the lights are all off and there’s ‘nothing to see here’

My MRI ‘s for the last 2 years have all been ‘lights off’ … or NEDA (NO Evidence Disease Activity) …. that’s thanks to Lemtrada. Before round 1 I was relapsing pretty much monthly and thanks to my trusty BUPA policy for the first year after diagnosis I did get the MRI’s at the time of the relapses ….. they were like Blackpool at Christmas

xx


sugaplum
11 months ago

Aww thankyou for the replies, I’ve been worrying and thinking I won’t be getting Lemtrada anymore. I haven’t heard from the nurse yet but if I’m honest I’m very impatient, everything needs to happen yesterday lol I will try to sit tight and wait for that call…….😉

Xx


imbarca
11 months ago

@sugaplum my neurologist was ok with my having it on the basis of my description of relapses only. My MRI also showed no new activity in a year. But I had definite relapses that were not (as far as anyone can tell) pseudorelapses due to infection. The thing he seemed most interested in was any new symptoms, however minor eg sensory issues in a place I’d not had them before. And that there had been at least some recovery from them.

I agree with @marcyg921 it’s as much about a baseline as anything.

Good luck 🙂


sugaplum
11 months ago

I’m starting to feel lots better about things, It really helps to hear other people’s experiences and stories. It has certainly eased my anxiety over it all and I’m feeling much more positive. I love this site, so helpful and welcoming. It can be lonely sometimes having MS when everyone around you says how well you look and you manage a smile while secretly rolling your eyes, if only they knew!! BUT I’m determined to make this a good year after a rubbish 2016!

Xx


tracyd
11 months ago

@sugarplum
Brizzle ?
I’m driving past you soon to go to the ‘Opening of the newly improved driveway party’ at my aunts house (the celebrate the strangest things in Wales)…. fancy a coffee ?
(warning you may also get to meet husband and dogs as leaving them in the car is a bit rude – LOL)

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