I’ve been on Tysabri for 22 months. I was having various problems before I started it, in particular walking problems and bladder control issues. I have to drive 12 miles to get to the huge hospital in Coventry where I have the infusion every four weeks. I have always catheterised before I leave home but still was struggling to get to the toilet in the hospital (it’s usually about 150 metres from the nearest parking space to the toilets inside the building and I can’t walk fast). Lots of times I ended up wet, especially at the beginning before I realised that monster pads were obligatory for this trip. Even using the big pads, I’ve ended up a bit wet sometimes (the pad not containing the leak, leaking as I pulled my trousers down). I think my symptoms were still getting worse for my first year on Tysabri - my walking definitely was.
Anyway, the time before this one, when I went to the hospital, I catherised at home and then managed to get to the toilet on the ground floor of the hospital without a problem. This time I managed to get to the ward where they do the infusions (on the fourth floor and not near the lift), sit down, deposit my bag and then go to the loo without a problem. I can’t describe how great this was. In fact, I’ve never told anyone about my experience with this. What could I say - I go to hospital once a month for an MS treatment and I generally wet myself while I’m there.
Has anyone else experienced such a long gap between starting Tysabri and seeing improvements in their condition? I’m on numerous other drugs but the only one that’s meant to help with bladder control is Vesicare and I’ve been on that the whole time. I have recently started taking Modafinil but I hadn’t started when I had my first (ever) good experience of getting to the loo in time, a month ago. Anyone got a view?