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Secondary-Progressive Multiple Sclerosis (SPMS) ... Anybody?

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    #16
    secondary progressive

    Originally posted by Karenkay View Post
    I'm secondary progressive now, after being diagnosed RRMS since 1989. The difference being steady decline in symptoms as opposed to rrms where there is an "attack" and the symptoms subside and/or completely go away.

    As for turning back the clock .... some have found DMT's their life saver and others not so much. I fall into the not so much category. lol Some have found diet and other "natural" ways to cope with the symptoms of MS.

    So .... with MS, it is vastly different from one person to the next. How's that for an answer?
    Hi, you are so right. Just because we are receiving treatment does not mean that we are ever going to get better. We are only slowing down the progression of the disease. I am taking Tysabri and think that it helps a little with trying to walk.

    I have heard all kinds of different approaches people are taking. I try to exercise every day and plus try to walk every day too. I don't want to lose that ability yet. And let us not forget about praying.

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      #17
      I have SPMS

      I have gone into the next phase. I no longer have flair ups but by disability has progresses. My neuro wanted me to go to Mt. Sinai MS clinic to have one of their specialists look at me and see what he said. I did that and here's what happened: the doctor ordered an MRI to see if there was anything new. There was... 3 new lesions in my brain. He took this as an opportunity an wants me back on a DMD. I haven't had much luck with meds recently. I was doing well on Gilenya but my neuro took me off it because of the new cases of PML. (I have the JC virus in my blood so he didn't e
      Want to take the chance). The Dr. From Mt. Sinai is recommending Aubagio. I need to meet with my neuro to begin treatment. I believe that the only thing we can do is continue to take a DMD even though there is nothing out there specifically designed for SPMS. Dr. Krieger (Mt. Sinai). Is very positive about the future of MS. He told me that there are medications in trial now designed to reverse the damage done from MS. He doesn't know when these drugs will be available but it will happen. I'm hoping I do well on Aubagio. Stay well

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        #18
        Hi
        This is a very late reply as I have only just joined this forum. I have been diagnosed with Secondary Progressive. In fact I didn't even know I had MS until 4 months ago. I have been told there is no treatment so am taking it upon myself to be as healthy as I can be. I have been to a nutritionist and alternative therapist. I have given up/significantly reduced wheat/dairy/sugar/alcohol and am on a wad of vitamins and minerals to try to keep my body as healthy as possible. In short, I don't know what to do but I have to feel I am doing something. MS sucks and it is taking away my hopes and dreams. The only people who really understand what MS is like are the sufferers and if we can't help ourselves and each other we become victims. I refuse to be a victim.

        Ooh, that's starting to sound like a rant!




        Originally posted by CindyLWho View Post
        Hi,

        I am looking for others that have also been diagnosed with SPMS? I've looked around in here; so far, no luck. Anybody?

        I have questions pertaining to the difference(s), comparably, about what I am experiencing now and what I was experiencing in 2003, when I was initially diagnosed with RRMS and that diagnosis got retracted.

        Also, I'm hoping the clock can be "somewhat turned back" now that I'm being treated?

        All feedback is appreciated. Thank you!!

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          #19
          Secondary Progressive MS

          Originally posted by CindyLWho View Post
          Hi,

          I am looking for others that have also been diagnosed with SPMS? I've looked around in here; so far, no luck. Anybody?

          I have questions pertaining to the difference(s), comparably, about what I am experiencing now and what I was experiencing in 2003, when I was initially diagnosed with RRMS and that diagnosis got retracted.

          Also, I'm hoping the clock can be "somewhat turned back" now that I'm being treated?

          All feedback is appreciated. Thank you!!
          All the medications we are taking are just to slow down the progression of our MS. Nothing, unfortunately, can reverse what has already been done to us. We just have to make the best of it. Good luck

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            #20
            Me too once I started not being able to use the treadmill

            Hello. I was told mine had progressed into SPMS in 2011. I went off all drugs a year later or so. This year though I've gotten into taking walks sometimes and even walking in grocery stores on a good day. But the issue was they said it got into my spine and my legs.

            My problem now is I just want to lay on the couch and watch TV and my wife hates me for it. I work from home but amd only effective for about 4 to 6 hours.

            If I could be writing or playing music I'd be much happier instead of making websites which I'm not so much in love with. I have to sit here on this chair and solve problems. That gets tough. Music is easy. Writing ok too.

            I haven't been here at msworld for a couple of years! Missed y'all

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              #21
              Originally posted by CindyLWho View Post
              Hi,

              I am looking for others that have also been diagnosed with SPMS? I've looked around in here; so far, no luck. Anybody?

              All feedback is appreciated. Thank you!!
              I was told I had SPMS in 2013 after being dx'd in 2005. The good news is that this year, I'm on a pretty good diet, and I started walking short amounts with no cane. I actually improved a small amount this year. I go to the park, and sometimes play pokemon and even shop in Costco w/o the scooter, although it hurts after 15 minutes. But I'm trying, despite the MS being in my spine an screwing up my walking. <* love to y'all *>

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