Does anyone else get head jerking, mine is so bad my neck is stiff & painful. I’m also getting pressure sensation in my head, feels like I am wearing a tight cap. Over the weekend my speech was very slurred and I had severe pain in my right eye (never had problems with my eyes). I’ve only had MS for 18 months and during this time I have only been symptom free for 3 months and that’s only because I had IV steroids - which were awful and not worth the 3 month reprieve. I am 3 months post Tysabri but I’m not sure I want to continue. I’m so fed up I just want a break from this sh***y life. TT. :-((
How bloody awful for you x sending you (( hugs)) and do so hope you feel better soon x
Sorry you are having a horrible time. I am on Tysabri too. The way I look at it is that this is the best chance I have of getting the best available nice to shitty ratio that MS allows me. It is not ideal, but unfortunately no ideal option is available. I’m not giving it up until I have a better idea. You are having to play life with a very dicey hand of cards at the moment, and that is very tough. I really hope that, as the Tysabri settles into your system properly, it soon buys you some of that respite you so badly need. Hang on in there! Alison x
I am so sorry I missed your post before. I used to suffer with what the neuro called a NO NO nod, my head would rock sideways one way and then the other. I realised it was happening but it wasn’t painful, more annoying to other people, i.e. O/H.
Then my legs, arms and trunk started with myoclonic jerks. When I saw my neuro she put me on to Clonazepam and Keppra, the jerks have eased up a great deal, still get them but not so violently. I must add that I have SPMS so I do not take the drug you are on. HTH.