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09-27-2008, 10:22 PM | #1 | |||
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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.
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"Thanks for this!" says: | SallyC (09-28-2008) |
09-27-2008, 11:02 PM | #2 | |||
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Magnate
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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
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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"Thanks for this!" says: | dmplaura (09-28-2008), Natalie8 (09-27-2008), SallyC (09-28-2008), Twinkletoes (09-28-2008), weegot5kiz (09-27-2008) |
09-28-2008, 09:32 AM | #3 | |||
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Grand Magnate
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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.
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09-28-2008, 04:40 PM | #4 | |||
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Grand Magnate
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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.
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09-28-2008, 09:12 PM | #5 | |||
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"Thanks for this!" says: | weegot5kiz (09-28-2008) |
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