This is typical of the medical proffesion, they havent got a clue what they are doing and thats because MS does NOT exist
RR, PP, SP. who dicided??
How do you know if your pp or sp I seem to have all and more than people saying they are sp/pp I just don't understand,, Arrrrr. My nuro says I'm borderline? What the hell does that mean? Thanks.
hi squiffy
i dont know either.
i think i was obviously rrms as i was in the middle of a huge relapse at the time of my diagnosis.
it was terrifying because i hasnt got a clue why my legs wanted to go off in the wrong direction, why i kept dropping things and knocking things over. it was a relief in the end to be told it was ms.
hmmm if i'd known then what i know now.....
i'm 6 years on from dx and seeng my ms specialist on monday.
i have a few new symptoms since last time i saw him.
now i'm in a quandary - do i tell him about the new symptoms and risk him telling me i'm now sp?
or do i just soldier on?
i'm hungover this morning - big style.
i won't tell him that!!
I sometimes wonder if the experts are even sure.
My neurologist at first said primary progressive, then changed his mind and said secondary progressive, which by definition must mean I was once relapsing remitting, I suppose that must have been when my gp was telling me there was nothing wrong!
the labelling brigade?
we are all unique-just like everyone else.........
dont spend too much time on looking for an answer-do something u enjoy instead.......
ellie
I agree with Ellie, why worry about what it's called, it's MS and the doctors will treat it accordingly. Keep the neuros informed and they will then know what works for you and what doesn't. If you don't tell them what's happening how will they know how to help you?
The point is that, I understand DMDs are pointless to pp/sp so if they can't be sure what we are why take a chance taking the drugs and injecting ourselfs if all it's going to do is make us constipated or worse, I do tell my people everything, and I get ok we haven't tried this yet have we?? To me it's stupid, all very well saing do somthing you enjoy, I enjoy golf and dancing, but as I can't stand for more that 5 mins or walk to the kitchen without crutches, all this in less than 2yrs, iv stopped taking all the meds, lets see if it makes any difference, I think most people are taking far to many meds, no wonder the phamasutical firms don't want to find a cure, billions per year?? Belive it or not I'm not as miserable as I sound,, lol (frustrated)
I'm PPMS SquiffyG. Neuro informed me last year and then sent me away......basicly said I'm on my own lol. Luckily with a good gp :-) I used to love dancing. Not what your talking about, just popping my favourite CDs on....miss that. Did have a slow smoochy sort of dance with my husband a couple of week ago in our room. If you call shuffling round in a circle dancing hehehe :-)
Hi Noreen,
Good on you for making the effort. At 56 I have grown into a grumpy old woman.
Bye the way I was dx PPMS and then he decided no it was SPMS.
All I know is I just seem to get progressively worse with no remission.
Mags xx
i dont know either.
i think i was obviously rrms as i was in the middle of a huge relapse at the time of my diagnosis.
it was terrifying because i hasnt got a clue why my legs wanted to go off in the wrong direction, why i kept dropping things and knocking things over. it was a relief in the end to be told it was ms.
hmmm if i'd known then what i know now.....
i'm 6 years on from dx and seeng my ms specialist on monday.
i have a few new symptoms since last time i saw him.
now i'm in a quandary - do i tell him about the new symptoms and risk him telling me i'm now sp?
or do i just soldier on?
i'm hungover this morning - big style.
i won't tell him that!!
carole x
My neurologist at first said primary progressive, then changed his mind and said secondary progressive, which by definition must mean I was once relapsing remitting, I suppose that must have been when my gp was telling me there was nothing wrong!
J x
we are all unique-just like everyone else.........
dont spend too much time on looking for an answer-do something u enjoy instead.......
ellie
Good on you for making the effort. At 56 I have grown into a grumpy old woman.
Bye the way I was dx PPMS and then he decided no it was SPMS.
All I know is I just seem to get progressively worse with no remission.
Mags xx