My name mandy and I was diagnosed with secondary progressive ms in 2018 so I feel that I’m still new to all, It took 5 years to diagnose me, I only see my neurologists once a year, and the ms nurse once a year. I was told about a new drug that come out but I can only go onto it if there’s a substantial change, so had a MRI and that shows any change will have to travel to Southampton from iow ( joy of joy) especially when you can’t walk well well 2steps and down
Hi Mandy, I was diagnosed last year with SPMS but they think i’ve had ms for 20 plus years.
I am waiting for a new tablet called Siponimod ( or the brand name is Mayzent) it was only licenced for England in November and I’ve been waiting for all the policies and procedures to be put in place. I’ve now had the test to tell me i can tolerate the drug and now there is more waiting for more procedures - but we are getting there (slowly!)
What drug are you going on? Do you have help with your walking?
I was diagnosed with SPMS over 10 years ago now. I see an MS nurse once a year and have always been told there are no drugs I can take. I am going to push for another MRI scan as I haven’t had one since my diagnosis. Wish you both luck with drugs please let me know how you get on.
Yes its siponimod as well, I have drop foot so use either a rollator indoors only, use a mobility scooter to get around outdoors,I wear a splint but because of covid I haven’t been able to get it updated
I use a FES device for my foot drop and a crutch to get around but have been thinking about a scooter for further distances but still thinking and getting my head around the idea - not quite ready yet.
I thought i would need a MRI scan before starting this drug, but was told the one i had about 18 months ago would be fine
Tyche - maybe its worth contacting your ms nurse and asking about siponimod? like i said it was only licenced at the end of last year. its meant to stop any worsening of symptoms
Hi could you tell me what the treatment is please.
Hi, graeme, welcome to you.
Treatment is different for everyone as ms is not the same
But on here ask and someone out there will be able to answer
Yes I intend to thanks
Hi. I’m due to start Mayzent in a couple of weeks have you started yet with this drug? If you how are you finding it?
Hi Dorajack, No I havent started mayzent yet, im still waiting for the drug company to contact me and arrange delivery. I will be the first in the county so its taking a while to sprt out procedures and paperwork. The nurse who came to take bloods and do an ECG said she looks after 4 others who have started it, and they are doing fine - so promising. If you start before i do, let me know how you get on as I will, maybe compare notes. Take care