Hi - I dont know where to start Im just feeling lost.
In April I was told by my nuro he felt my MS had moved on to secondary and there was nothing for me (well those are my words!). In May I got my gp to perscribe me a 5 day course of steriods :):) I felt great - but confused, obviously I was hoping they’d work but surely if i know had SMS they wouldnt. Try as I might I couldnt get in touch with my nuro or nurses. I felt in limbo.
5 months later Im experencing some new symptoms - my feet ache like Ive been walking miles (in reality Im lucky if I can walk 100yds!)My feet and legs feel like Ive something tightcovering them. I have foot drop- but this is worse than usual. The worse is this almost constant twitch in my left calf and sicken pain behind my knees that I dont know how to explain. Ive increased my baclofen which is helping a little.
I thought with SMS you didnt get new symptoms or steriods worked.
I have PPMS when i was diagnosed they put me on steroids right away and I have been on them a few times since then I found that they did work , I however have found that like a lot of medication for MS I seem to not tolorate the side effects and try other aspects like trying to keep fit and meditation tapes.I have had MS for eight years now and yes it has it’s trying times I relate to it like having a distruptive sister who doesn’t want to leave. I have heard a number of comments about SPMS and PPMS and in cases some of my friends with RRMS have it worse. I have found this has been very slow progression and if i promise not to look back on life I get there, can no longer work full time however I volunteer two days and help with other charitable work so things aint too bad. I was also told to go life my life to the best of my ability and you know I became my own expert on my MS, good luck with the doctors but if you want to chat with someone with PPMS just drop me a line.
Hi Sarah. I have been SP for six years. I was remitting relapsing for sixteen years before that. Never needed steroids when I was RR. Have had three courses of oral steroids and two lots of iv steroids in the six years and got an improvement each time for a couple of months. I can identify with the painful feet and legs. Baclofen and Gabapentin helped with this. I get a lot of weird sensations. At the moment the inside of my right ear goes numb every now and again! I personally don’t believe that nothing can be done for people with SPMS.
I don’t think the RRMS/SPMS boundary is necessarily as black and white as you might have been led to believe. In general, relapses taper off as the disease moves to a more progressive phase, but it’s possible to have SPMS with the odd relapse superimposed on it. Don’t forget, the MS doesn’t know which type it is, so it doesn’t always conform to type. It’s just a convenient label used by neuros.
I felt great - but confused, obviously I was hoping they’d work but surely if i know had SMS they wouldnt. Try as I might I couldnt get in touch with my nuro or nurses. I felt in limbo.