Currently Struggling
I was diagnosed about 15 years ago with RRMS and now have been told I am progressing to SPMS. I've been taking Tysabri for about 10 years and I don't think it's working as well as it was when I was first dx. I currently do not have a legit Neurologist, a DO and she's just a resident so I feel like we don't have much of a connection and shes just telling me what she knows and isn't actually helping. At the moment, I cannot lift my right leg very high so my foot slides on the ground making it difficult to walk. I use a rollator and cane, but I still trip and fall a lot. I am also a stay at home mom with a 3 year old and I cannot keep up with him. I'm trying to clean his messes and other things but I can only move for about 7 minutes before I need to sit. I can't get much done and I feel like it's sort of making my husband mad that he has to walk over things and can't find stuff because I can't put anything away. He helps when he can but he runs a business from home and whatnot, so his time is limited on certain days. I am very stressed out and anxiety is messing with my mind. I'm a nice person, I just want to do more for my family.
really sorry to hear that you are having such a difficult time. I wish I could offer you some practical advice. I hope someone sympathising with your situation is some small comfort
I hear you there- it’s very challenging to have to juggle plates without the strength or coordination to do so with a home and toddler to look after. Do you have access to at least an MS nurse/team? They at least may have access to information/advice for you. it must be very difficult with a neurology Dr who isn’t particularly up to speed in terms of MS. im in the same position as the person who previously replied to you that I can’t think of practical advice - do you have any support from family/friends who could at least help with picking up trip hazards?! I’m still trying to train my husband to stop leaving his blxxxy shoes in my path for me to trip over (after 25+ yrs!). do you get regular MRI scans? this would be something to push for if you can? I’m sorry I don’t know how much access to these things you have available to you. Take care x