Hi all, I know they can vary from weeks/moths even years but it’s still new to me and so learning. Brief overview: - dx in dec 2013 after a year of sporadic systems inc sensory problems and optic neuritis. - started Copaxone at the start of March this year. - relapse started in March also with optic neuritis/nerve pain and fatigue. - was off work and went back for 5 days before falling ill (end of April) - had a really bad time (Labyrinthitis symptoms) and my balance vision is still not great. This has been going on for nearly 7 weeks now. I’m still off work, not able to drive, having to get a walking stick as can’t walk without someone’s support and just anxious. I’m 32 with a good job I’ve worked hard at. Work are being great but I’m scared my balance won’t return now. I struggle with screens/lights as have random double vision (apologies as this is physically hard to type so there are probably lots of typos, grammar inaccuracies) For the first time since my dx, my independence is being lost. I.m really worried about having to face up to changes I may need to make etc. I’m going to ring my MS Nuurse on Monday. Had no contact since just after I was really ill. I kinda hoped I’d be well on the mend by now but I’m just not. I’m not asking for answers, just needed to get it out of my head. I’m thinking about MS a lot now which I didn’t before. Hope everyone is good/well though L xx
Ha…months not moths x
Hi Have you had steroids at all? If it’s affecting stuff badly they will prescribe them. I was dx nov relapse may, big relapse June right side didn’t work at all from walking to writing. Then small stuff in between then a big one November other side became affected eye muscles wouldn’t work double vision. Had steroids to both of them. Have had 2 relapses since and haven’t had steroids for them Incase I have another big one Sorry I can’t offer more help. Just my experience. I’m on extavia they’re considering moving me to 2md line dmds Ms I find very confusing. I feel like I’m never off the phone X
7 weeks seems like a long time,but it isnt long at all,i have had relapses like you describe and they have lasted around 10 weeks before getting better,and then it took another 6 weeks of being up and down a lot until gradually i felt better,
keep pacing yourself,rest a lot,do things that you can within reason,and stay positive,tell yourself you will get better,but it will take time and patience,i have felt at times that i would never pick up,but i always did.
My symptoms started again 2 weeks after I started on DMD’s (Rebif) and have gotten worse over the months. I was having about 3 a week now it is constant. Same as you with balance, drunk feeling, writing, weakness in right leg. I am at a new neurologist on Wednesday at the same hospital but hopefully I’ll get answers from his one as the other one just seemed to fob me off telling me it wasn’t a relapse just continuation of what I had originally experienced and he’d see me in 6 months. So all in all this ‘continuation’ has lasted over 4 months and is getting worse. I look at it as a relapse. I am on pregabalin 150mg at breakfast and after teatime, 50mg at lunch time and the Rebif. My MS nurse stopped the Amantadine about a month ago as I wanted to see if it was causing my balance/intoxicated feeling and because I wasn’t having problems anymore with fatigue - it didn’t. So IF this is a relapse it has lasted over 4 months now. Let’s hope I get some joy at THIS neurologist or I will be going further afield! I just wish they would take the time to explain these things so that us as the ones who have MS knew what and why things were happening. I was dx in December 2013 so am new to all this.
Thanks all. Emma: no I haven’t had any steriods. Just waiting for a call as have left message for MS nurse. I never normally ring them but this started in March so need help now. L x