Adjusting to SPMS
Hi all!
After around a year and a half of back and forth with my neurologist I have been told that I do in fact have Secondary Progressive MS now. It’s a relief to have answers and the idea of a treatment (Siponimod) as I used up all my options for RRMS.
Now however I am really struggling to come to terms with my new “baseline”. Everyday I’m flagging pretty dramatically- I’m using a chair, I get waves of feeling sedated, trying to eat well but find I’m too tired to finish meals? Just overall I feel truly dreadful and I was wondering what people living with SPMS do to dampen some of the daily issues? I’m on pain medication but it isn’t doing much if I’m honest and waiting for an appointment with my rehab consultant.
I’m finding my mood is very low with the reality just now and would like to do something before I get too sad.
Any advice would be appreciated 💛
hello @Regan, i know how you feel, i progressed to SPMS last may, and was put on spinamod. I type of knew i had progressed, but still a shock. One thing i have noticed is my consultant has lost interest in me, they moved my next appointment to dec 2023 December. I was on Lemtrada before. Good luck
I too have SPMS and it really is annoying isn’t it?!! I’m not fortunate enough to be taking ANYTHING into n the way of DND’s and have only ever been prescribed Nabilone. I’m just irritated by the fact that since my fabulous consultant moved up to St. Andrew’s uni in Scotland, I no longer have a regular neurologist. I do have a great rehabilitation consultant but there’s not a whole load he can do:-( I’m just rattling along in the hope that I haven’t been entirely forgotten about!