Hi al !! New to this forum, but have been reading posts on here for a long time and having a cry or a giggle when someone hits the spot !!
I have had RRMS for over 20 years, dx in 2005, and it’s a DEMON !! not sure if ive progressed or not, was told it was ’ just a blip’ by my neuro !! been in relapse for 4 months now and it’s a bad one !! symptoms dont seem to be improving like on previous occasions,usually iv’e recovered pretty well after a few weeks, Started in Jan with bladder and bowel problems and numb legs and arms, last relapse was right side, previous ones have been left side, now it’s BOTH !! Was hospitalized for 5 days on methyl pred, was ok ish for a week, and then BAM !! symptoms returned with a vengeance, had such bad spasms in my BACK, NECK, SCALP, and TONGUE !!! was in tears, Neuro said symptoms weren’t MS related lol, (since changed my neuro) Never had spasms like these before, only MS hug, has anyone else out there experienced something similar ? was given baclofen which worked for a few weeks but didn’t like feeling like a zombie and it made my arms and legs really weak. Also tried pregabalyn, YUCK !! didnt get on with that either, Now on gabapentin 300 mg 3x a day and zoplicone 7.5 mg at night. I find if i don’t get a good nights sleep, I feel CRAP the next day, Spasms and fatigue are HORRENDOUS !! by 3pm most days my tongue is like an ironing board and i feel like Quasimodo !! Have to rest for a few hours, tried pro-plus and strong coffee ,didnt help at all, legs have now become so weak, been using a wheelchair and scooter for a few weeks now. Does anyone out there know of ANYTHING that helps with overwhelming fatigue ??? I also started to use alternative methods to relieve the spasms, tiger balm and a massager, but it made me feel WORSE a few hours later, don’t know what to do ,Getting so fed up, not sure if i’ll just have to accept that this is how its going to be from now on ?!! My neurologist assured me it was just a relapse, sure is taking its time !! maybe i’m just looking for answers that don’t exist? The other day I was out in a cafe with my three daughters, and I bit right through my tongue, It hurt like hell !! was moaning about it for most of the day until one of them told me to stop whingeing about it , Ahhh, the empathy of offspring !! I know it’s hard for them to appreciate just how you feel, I didn’t react, I just stopped whingeing!! Sorry for the rant ! but would really like some positive feedback, really low at the mo and feeling really crap right now , sore tongue and buzzing allover, so signing off…