highflyingbird 24/12/17
Last reply 6 months ago
2 weeks post lemtrada round 1

hi guys,
just need to pick yer brain for a moment. i am 2 weeks post lemtrada and i have experienced slight improvements regarding my bathroom and tingling and numbness, actually it has improved by about 60% which is massive. now i know i have steroids in me but i have had steroid treatment over the past 6 years and it has never done this. now i am not getting ahead of myself hear not by a long shot because i know the animal that is MS and i know what its capable of.
so anyway here is my question. it seems my walking and balance is really struggling and these would be symptoms i would have had before lemtrada treatment but the symptoms seem to be more severe as in im not able to get around without a crutch and standing is difficult. Before lemtrada i was able to walk unaided for about 10 foot and i had a lot more strength in my legs. now i am struggling with serious fatigue post lemtrada as expected and i think this is effecting my ability to walk and get around.
i know things have settled as i dont feel it in my body anymore-ye know what i mean………but i would appreciate yer take on this as ye have been through the dark side and i am just looking for a bit of light to be cast in on the shadows to help me get through it to………..
Have a peaceful Christmas and New Year (i love a new year-new beginnings-out with the old in with the new)
ye know what i mean………………….the blue sky is up there somewhere…

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tomlev
6 months ago

hello, i am post lemtrada round one by 7 months, as you stated fatigue is still the noticeable bugbear that persists, i have to believe we will recover from this, round 1 – our bodies took a beating from this drug coming in and killing (all be it the bad) cells, now our bodies are working really hard to replace with nice new ones, 2nd round – i think will be easier as its just clearing up any remaining baddies! i have been told that it can take years to build back up to full strength again and to think how long it took for ms to progress to where we are now, that will give a guide on the timeframe for alemtuzumab to show its true effects.

got to think positive! after all we are still alive! 🙂
merry Christmas


highflyingbird
6 months ago

Cheers buddy
its true,we are still alive and we are stronger for what we deal with every day, appreciate the reply, merry christmas


aline-br
6 months ago

Hi. I’ve been having similar problems. I’m 30 days after round 1 and I’ve noticed some of my previous symptoms improved, such as numbness and eyesight. On the other hand, my spasticity, which is my main MS problem, has gotten much worse, even worse than it was before the treatment. It affects my lower limbs, so it really impaires my walking and balance. I don’t know what to make of it since I was feeling better during and for about 20 days after the treatment.
My doctor just told me to be patient, but I’d love to know if someone else had this and if it got better over time.


highflyingbird
6 months ago

Hi
Yes the spasticity seems to be a bigger issue post treatment even though i feel other symptoms getting better. numbness and tingling have really improved and urgency for the bathroom has near gone and normalised. now this would suggest to me that its just the effects of the treatment on our bodies. there is a lot going on in there at the moment. i was with my Doctor yesterday whom agreed with my theory and also added that there could possibility be a lot of inflammation around the damage at the moment due to the lack of immune response…. as he explained that the immune system (even though it is the problem in our case) dose keep inflammation down within the body so we are more pron to this at the moment.
i think its a waiting game for us. i have requested you as a friend if u want to share this journey together ill let u know how things go for me and i would be interested in how u are doing. always remember two things 1. when u get better imagine how much stronger you will be after going through this war….and 2. there is a blue sky above them clouds .. so stay strong my friend…..

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