I’ve been really lucky for the past 22 years since diagnosis - occasional symptoms, but a more or less routine life. My consultant told me I had ‘benign’ MS, and I guess I’ve managed to look the other way for a long time… Since the autumn, though, not so good - had a week of steroids in Sept (and I can’t even remember why), and at Xmas, when my left arm stopped working, another week - the treatment really knocked my system around (kidneys didn’t like it, I’m also Type 1 diabetic so blood sugar went wild). My arm came back, but past few weeks I’ve not been able to walk properly, using a stick to get to the end of the garden path, not able to drive - or work (self employed musician). All a bit shit really!
At my last check up, the MS nurse seemed keen for me to go onto Tysabri - which I wouldn’t agree to without researching. I came back and did that, but was overtaken by this relapse, so haven’t seen her since (not able to drive up to the hospital which is 35 miles away). A letter now from the consultant also keen that I agree to Tysabri, although no scan yet to assess what’s happening up there - do any of you have advice? I feel pushed into this - and what happens next? I’ve read that after two years, this treatment will be pulled for risk of brain infection then what. Should mention that I have been on Avonex for several years, until now.
I’m feeling alone with all this. My husband’s a sweety but doesn’t want to face what’s happening, and I don’t want to worry my kids, one at uni and the other about to take Alevels. Would really appreciate your thoughts, please? Thanks! Amanda