my mother and PPMS
 

I just heard from my 63 year old mother that she has to get 5 days of Solumedrol. She was diagnosed in Aug. 2007. I was diagnosed out of the blue in Sept. 2007. They think she has had PPMS for the past 5 years or so. Anyhow, her leg is dragging badly and is incredibly weak. Now her right side may be getting weak. They think it is from the lesion on her spine. The problem with my mother is this has been going on for 2 weeks and she just ignored it until it got too bad (that's her thing -- denial). Is it customary to give PPMS people doses of steroids? Do steroids work on PPMS or do you just keep progressing from where you are? I thought nothing helped PPMS.

Now I will say it's hard because my mother and I are not close (she was a pretty bad mother--long story). But of course I feel for her obviously since this is her first time around on steroids. And it is hard dealing with the anxiety and stress of having to take steroids. She has to drive herself 1 hour to the hospital and back each day. Is that feasible? Her jerk of a live in boyfriend won't drive her even though he is retired and doesn't work.

PPMS and RRMS are two entirely separate disease right? I mean if I have RRMS it won't turn into PPMS, right? Just SPMS.? What exactly does SPMS look like? Do you know it is SPMS only because you used to have the relapsing remitting form.

Maybe her doc feels that if the steroids work, she'll keep the function she has for a while longer.

It's my understanding the PPMS is a distinctly different disease. It's all downhill from the start. With RRMS,SRMS, it's ups and downs. With SPMS you get to a point where you have no remission. With PRMS, there are a few relapses with or without remission.

Maybe Mom didn't call the doc because he told her she had PPMS and she figured that there was nothing that could be done for her anyway.

How one reacts when doing the steroids is an individual thing. I drove myself back and forth each day to do the IVSM, went to work for the two days I had left that week as scheduled, and the only problem I had was that I stayed up for about 80 hours before I slept.

Here's a link to the explanation of the different diseases and stages from the NMSS: http://www.nationalmssociety.org/liv...ase/index.aspx

I've had PPMS, diagnosed since 2002- but suspect beginnings in 1994. Have never remitted, steadily got worse, but never need of, or had Steroids. Every PWMS is so different. I'm in a power chair but know so many PPMSers who walk.Every PWMS is so different.

i'm sorry about your mom.
i sounds like her life isn't too pleasant.
they should be able to do homecare for steroids. the nurse will start the iv and give the med each day.

your mom's dr should order this and your mom should request it.
driving in her condition doesn't sound very safe. plus it's such a long trip.

i was dx'd in '03 rrms. and i "had had it for some time" per my dr. that's when i first got symptomatic. now i'm spms. i've had some decrease in my strength and mobility but i'm still walking (with aids), driving and i'm independent.
i've never had an outright flare. i'm pretty much stable.

so i think that's a good thing.
ppms is more serious. i'm sorry your mom has it but glad you don't.
try to take each day at a time.
stay strong. you can do it.

Thanks all for the thoughts. The doc. told my mother she wants her to be at the outpatient hospital getting the drug, not with home care, since my mother has never had steroids before. But having her drive an hour there and back seems questionableto me. They definitely told her it was PPMS because the doc. pretty much said there is no treatment for PPMS. But I'm starting to wonder if they think she doesn't have PPMS and maybe a different kind of MS since they are giving her steroids. That's why I asked if PPMS'ers ever get steroids. She is very freaked out about the whole thing, not surprisingly.