Hello everyone. I’m back again asking for help/advice/thoughts…
I’ve got a wonderful Neuro and NHS treatment from start to now for me has been amazing. Can’t fault it at all, such amazing support which I am very grateful for as I know that isn’t always the case.
Anyway, I had a meeting with my Neuro yesterday to discuss treatment options and for him to (his words) educate me towards making a decision. For background, I’m 34 and been recently diagnosed with RRMS. 3 relapses in total, two in last four months. First one was most serious as I lost sight in one eye which has now recovered but I’ve found the relapses so far very simple to cope with. And I know that is not everyone’s experience.
As far as I can see I’ve been offered every sort of treatment available from injections, to tablets (Tecfidera) to the monthly infusions of Tysabri or annual infusions of whatever it’s called but it didn’t sound very nice (consultant suggested it was a form of chemo). I’m sorry but I don’t have the name as I can’t decipher his writing and can’t narrow it down from websites. I’d be massively grateful for your thoughts on these and not what you would do in my position as I realise I can only answer that but what works well for you. I have a massive phobia to bring sick and sickness as a side effect really bothers me, other side effects I feel I can cope with.
Also as I’ve been offered the high end treatment I am wondering if they offer that generally or not - he suggested it was extremely expensive (£50,000) and I suppose my thoughts are - are they offering that because I have bad signs that they know of, when tablets would do for many others? Or because of my age and it gives me a longer period hopefully when I’ll be OK? I met a lady who had primary or secondary progressive but she was on no treatment and hadn’t seemed to have been offered it, so why am I offered the lot when I wasn’t as bad as she was?! (She wasn’t terrible by any means). I’ve got time to make a decision but it’s worried me abit as I didn’t realise it would be quite as complicated as it is - especially when considering the side effects!
Sorry for the long-ish post and any comments or thoughts would be hugely appreciated.
Many thanks, Sam