I saw my neuro yesterday, who delightfully ignored pretty much everything I tried to discuss with him and skipped straight into haranguing me into taking fingolimod.
There was no real discussion; more an assumption that this was the best option (I have been on all the injectable DMDs to no effect) and that I had very little say in it. Of course, I’m grateful that it’s on offer and I know that others aren’t lucky enough to be given this chance, but I was really miffed by his attitude. I was in and out in 5 minutes.
Another issue I have is that I like to do my research; I’m a nerd who is interested in trial data and it concerns me that long term follow-up information on the drug is thin on the ground. Also, the lowering of your immune system worries me in that I struggle with work now but I’m able to work at home when I’m bad - but if I were to get infections (I know this isn’t necessarily going to happen), will I even be able to do that?
I’ve re-read this and sound like a right whinger - I don’t mean to. I just got so wound up yesterday! Please don’t think I’m ungrateful, but I need some guidance
Very best wishes