Hi there, I’m struggling quite a lot with my MS. I was diagnosed in March this year, experienced top to toe symptoms and ended up in hospital pre diagnosis. Since then I’ve had several relapses and the neurologist has said my MS is quite active. I’ve started tysabri and had three infusions so far. I’ve also picked up several infections which delayed my last infusion. Sometimes I feel okay, but often I feel exhausted and imprisoned. I have lots I want to do with my uni course and job but I often have to reduce my work load. I try to pace but sometimes it isn’t possible. I feel like a failure often and frustrated when I’m too tired to do simple things like cook or wash up for my partner. I am so so tired and struggling with balance, double vision so I always wear a prism on my glasses and lots of ache. I have been using a wheelchair but it is so difficult because I live in a very cobbley and hilly place. Because I’m an occasional wheelchair user I cannot access the wheelchair scheme to buy an alternative but I’m tempted to buy a different one. Least that way I can actually get to uni rather than be absolutely exhausted. I am in a fair amount of pain with back ache, thighs etc. They are unsure whether it is neuropathy or pain hypersensitivity. I don’t really want to take more meds. I just don’t know what to do. I already have type 1 diabetes and now rrms. It feels too much sometimes. Thanks for any thoughts
Really sorry to hear how hard things are for you. I wanted to let you know, Tysabri seems to take a long time to have an effect - one person I know held steady on Tysabri for the first year he was on it and then started to improve. I only met him after he had been on it for seven years (he was one of the first people in this country to be given it) and by that time, you really couldn’t tell there was anything wrong with him.
Anyway, it’s really worth hanging on in there and hoping. In the meantime, maybe talk to an MS nurse or your neuro about whether there are non-drug things that could help you - getting physio help, getting massages or other things.
I hope things get better for you soon.
Hello, just a thought would a mini mobility scooter like a Gogo or something similar be better for getting around uni etc rather than the effort involved in self propelling a wheelchair? I appreciate there’s a cost implication but if you were thinking of spending on a new wheelchair anyway. If you are a member of the MS society and can’t afford the scooter maybe you could apply for a grant from them towards the cost.
Sorry you are struggling and feeling rotten. xx