Hi everyone. I’m Donna, 25, and was diagnosed with rrms in June 2012 following a severe relapse. I’ve had problems since being about 21 but I never dreamed I had ms. The relapse I had in June caused severe vertigo and vomiting which after a course of steroids subsided slightly but I was left with dizziness all the time. I began copaxone in sept last year and then had another relapse causing double vision and worsened vertigo. I started Tysabri last month and am hoping this is going to work for me. I have a job but haven’t worked for over 6 months now and just want to get back to some normality, it sometimes feels like ill be dizzy forever. I’m just wondering if anyone has had these horrible symptoms and also anyone currently using tysabri? Would love to talk to someone in the same boat.
Yes, Donna. I first became ill in August…in fact I was initially diagnosed with labyrinthitis because of the extreme dizziness. After further symptoms emerged and investigations at the neuro department, I was diagnosed with MS in September. The dizziness has never gone and I’ve been off work since August. No one has mentioned that there are meds available to help with it other than stemitil (procholperazine) which I took when it was thought to be labyrinthitis. It helps but not greatly, so I would be interested to hear about other options.
yeah this it for me too, been on the dizziness on and off though mostly on since march 2012. Do you find that it effects your eyes? like you cant focus like you used too?
Yes, it’s awful. I find the tv floats upwards too !! When hubby watches F1 it can actually makes me feel sick.
Yes I was diagnosed with labrynthitis initially also. I have some exercises which the ms nurse gave me to try. Although they seemed to help before my last relapse, I feel like I’m stuck again. Stemitil have never worked for me unfortunately. Are you using any DMD’s?
It does effect my eyes too, sometimes with severe pain like it hurts to move them. I also had double vision during my last relapse so dizziness was worse
Is anyone on any DMD’s?
i can still work n that but its becomin a pain in the a*se, what you doin to control it, you doin any diet changes etc?
im goin on copaxone soonish
Tried stemitil doesn’t work. Ms nurse gave me some exercises to try although they did seem to help initially after the last relapse I feel stuck at square one again
Hi Donna, and welcome 
Please ask for an urgent referral to neurophysio (either your GP or your MS nurse should be able to arrange it). They can show you how to do the Cawthorne-Cooksey exercises (maybe what the nurse showed you). They have to be done religiously for quite a few weeks, but they really can work wonders so it’s worth persevering (again!). Having a proper physio support you through this is worth it too.
As for DMDs, yes, quite a lot of us are on one although less on Tysabri than on one of the injectables. You’ll find more people on Tysabri on the Everyday Living forum though, so if you want a “Tysabri-buddy” (for want of a better expression!), that’s probably the best place to post. (It’s easy to make buddies of all sorts on here :-))
Several people on here have had wonderful results with Tysabri and have been able to go back to work - let’s hope you have a similar experience
Karen x
Thanks Karen I will do that x