I am posting this Anon because my head is currently all over the place. I have a very big decision to make regarding Tysibri and I need to do this in the next couple of weeks.
I have RRMS and I have been on Tysibri for the last few months. I am just coming up to my first review with my neuro and I think that I am one of the people that it does not work for.
Positive side is that I haven’t had a major flare.
Negative side is that I have been gently sliding downhill since I started and there is a chance that I am going towards a progressive form of MS.
I have been experiencing almost constant fatigue when before I only had it occasionally or if I had an infection.
My balance is completely shot.
My foot drop has got worse.
My left side is considerably weaker than it was.
Dexterity almost non existent.
The MS nurse and the junior and senior neoro registrars I have seen through the last few months are VERY concerned and I have had my appointment with the consultant neuro bumped forward by 2 months.
I went into Tysibri with both eyes fully open about what it could and could not do. The team keep telling me how impressed they are with my research and knowledge of the treatment. I wasn’t expecting miracles but it now obviously looks like I am one of the people that it doesn’t help. I am devastated and crying all the time because it seems so unfair.
Sorry about the misery post but this is the only place I can vent. No matter how many times that I explained it to them, Family and friends were obviously looking at this as a cure and they can’t seem to cope with the fact that I seem to be getting worse.