I have been AWOL for a while due to several crappy MS related happenings. Gosh i could write forever on those “happenings” but i’ll try keep it succinct. Ha. I did say TRY.
So i had a terrible relapse a few months after coming off Gilenya (as i wasn’t tolerating it very well, lymphocyte count far too low and was kept low for way too long. Oh PML stress, i’m glad you’re finally gone). A very bad relapse. I didn’t realise how mild my relapses had been until this year. I was in Spain, bumming around in Barcelona when this hit and i was stuck in bed. Unable to remember anything from one minute to the next, in so many types of pain, couldn’t get dressed, couldn’t shower, could barely eat, couldn’t brush my teeth. My lovely Mum came over and rescued me. She showered me and fed me and sat me on a cushion and dragged me down 8 flights of stairs on my bum. Wow, mums are bloody great. It was stressful. I was fed onto a plane and got home and told to go straight to hospital by my Neurologist. Was in hospital for a couple of weeks being fed up, i’d lost so much weight as i firstly couldn’t eat and i felt motion sickness and had a reduced appetite. I was a mess. My Neurologist told me, after an MRI scan, that my relapse showed more new lesions than she had seen in ten years. I’m still recovering so my memory is not so great so i can’t blabber on about all the symptoms i had as i don’t remember them all right now. Anyway, my neurologist said i must go on Lemtrada as another relapse like this could leave me with “locked in syndrome”. Nobody wants to hear that so i set aside all my reservations about Lemtrada and said i’d get on it as soon as they could administer it. Looking back, i feel like the decision i made wasn’t entirely mine. A very ill woman stuck in bed being told the next relapse could leave me extremely disabled and if i took Lemtrada i may be rock climbing again in a year (i was seriously told this). I seemed like a no brainer but it also seemed like my choice was taken away from me. My desperate self agreed and i went and had Lemtrada and am trying to recover from that experience and the mega-relapse too. But seen as my MS Nurses have been largely difficult to get any answers out of post-Lemtrada i thought i’d ask a question on here. I have a new rubbish symptom post-Lemtrada. My lips, go very numb all of a sudden and my legs go weak and lose all coordination. If i try and do anything with my arms they don’t respond like i’d want them too and violently spasm out. Say if i try and go to open a door, my arm will instead fly up in the air or hit me in the face or something like that. I also feel very faint like i’m about to pass out. The numbness and lack of coordination and violent spasms and faintness will last for about 30 seconds and then i’ll be fine again. What the hell! This happens about 40 times a day meaning that even though i’m slowly recovering from Lemtrada/my mega-relapse, i can’t really go out alone, not even to the shop on the corner with sticks as when this happens it is scary and i could get run over. Blah.
This is the end of my verbose rant which may not make any sense and really i could write about 100 new posts with all the new stuff i’m experiencing but i thought NEW symptoms weren’t meant to occur after Lemtrada and this one isn’t nice and quite distressing. This may not make perfect sense as after the latest relapse my ability to be coherent has kinda reduced but i tried!
Thank you in advance for anyone who has trawled though this splurge!