erm im stuck with this, how do you know what type of ms you have? does someone tell you? do you have to wait and see? or do you only ever have one type of ms and thats it? or does everyone start with one type then changes? i know theres alot of questions, but i have no idea about this and i feel stupid asking the ms nurse, i was only diagnosed last march, but have been showing symptoms for 9 years now and have noticed patterns to things happening, ive read about the different types of ms but im still confused (which is easily done), so any help trying to explain this id be greatfull for, thanks alot, vicki
Nobody ever told me what type of MS I had either (I was dx in 95 they were even less informative in those days)
I’ve never had relapses so I guess it wasn’t RR. About 3 years ago my existing symptoms got worse and new ones joined the party. After about a year of deterioration the neuro put Secondary Progressive on my file. I was probably PP to start with though so it’s all a load of BS.
You shouldn’t feel silly asking the MS nurse. This is exactly the sort of thing that they do – discuss your dx and the impact that might have on potential medications. If your RR for example you will need to be having a conversation about DMDs They will be happy to talk to you about this. Do your nurses do a clinic that you could make an appointment to go and have a chat?
im not sure what they do yet, i have another home appointment with the ms nurse in a month, so i can ask him then, the neurologist asked about past symptoms and how often i had them n such, the neurologist hasnt, so all i know is that over the years symptoms show up for a few months then wear off, then after a yr or 2 they come back for a few months and it keeps bouncing around like that except they seem to last longer and get worse as they keep turning up, i dont want to assume anything but id like to know which type i have so atleast i know if its going to keep going as it is or just keep getting worse and eventually stay worse or not, i know theres no deffinate answers to ms and whats going to happen next, how long it lasts and if it will get worse or not, as its unpredictable, thats the problem, im the sort of person who wants to know exactly what im in for and when
Hi, well if you have times when you are relatively well, and then bad episodes occur regulalry, then that must be RR.
RR can go on to be Secondary.
Secondary doesnt turn to Primary.
Primary starts and doesnt let up…although the disablity progression can vary widely.
And this from someone who doesnt have PPMS anymore…???
If I havent got it right, maybe another mser will be along to explain it better.
I think you have every right to ask which type you have.
There are those amongst us who dont think it important to know which type they have.
But there are drugs for some types and not others, to slow attacks/disability.
This may help:
I’m not sure either. I’ve been told I have RRMS but my symptoms have never fully gone away so its hard to tell!
My neuro said she would wait a year or two to decide what type of ms I had. Then informed me I suffered RRMS because I go back to a level (numb dropped foot, hands numb & blind in my left eye). I often get pins and needles and weakness on my right side, at differing times its worse than others, however I still tend to go back to some level, although after 11 years with ms Im now going downhill slightly, slower, weaker and more fatigue, with more numbness.
I do hope you soon get what type, as it does help knowing what course your ms is likely to go, although nothing is sacred.
ok thanks everyone, i think ill just concentrate on one day at a time and take it from there, im still trying to think of a reason why i got ms but my twisted sense of humour hasnt kicked in yet, so as soon as i think of a reason then ill post it lol, im sure ill come up with something (hopefully not offensive to others) my sense of humour can be a little twisted at times, its the one good thing i have left i think hahaha
A reason why you got MS? `Cos our bodies have a mind of their own and dont think to ask our permission before it lets nasties in!