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    secondary progressive- non active

    I wish i can switch to another medication. Have secondart Progressive and the Demon slowly damages my body. i Take tecfidira but it does nothing. thanks for lettting me vent. Roxy118

    #2
    Roxy,
    Like me, my doctors believe I am properly diagnosed as non-active SPMS, but remain listed as RRMS.

    I had a follow-up appointment last Monday and we discussed my recent and sudden disability progression.

    I admitted that I was stressed, scared and scattered about what was going on with my body.

    I might be switching medications by the end if the year. I'm currently on rituximab.

    I wish you well.

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      #3
      Hi Roxy and Marco. Just wanted to say that I am sorry for what you are going thru. I am sure I would feel the same way - angry, scared, anxious, and many other feelings. Truly hope you both find something to slow down the progression and are able to find some inner peace.
      Kathy
      DX 01/06, currently on Tysabri

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        #4
        The MS researchers have not yet found a successful medication for the type of progression that is driven primarily by neurodegeneration.

        The current meds are targeted for inflammatory relapses and the progression that is driven by inflammatory relapses.

        This quote is from the recent article posted by Marco "Progression independent of relapse activity" :

        "Clinical trials targeting PIRA as the primary endpoint have yet to be successfully undertaken but represent the new frontier for therapeutic efficacy."

        I have PPMS and can relate with the progression. Mine has been mostly steady over the years, with some plateaus and also bouts of acceleration of the progression.



        PPMS for 26 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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          #5
          I was just thinking how who are SPMS & PPMS are reminded minute by minute of our disease. When I was initially DX with RRMS, I led a functional life and reminded when i had an exacerbation. NON active SPMS is a slow reminder of your future. I guess im admitting how bitter I really am. Roxy

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            #6
            I'm also secondary progressive non active MS.

            My first few years, after my MS flates stopped, I was declining steadily and noticeably. A friend told me about functional medicine and referred me to her doctor.

            Functional medicine focuses on finding the causes of disease and changing lifestyle and diet, rather than just treating and masking symptoms with medication.

            Dr G taught me a lot about non toxic personal care products and cleaning products, about stress management, about regular exercise, about getting rid of plastics, non stick cookware and microwaves in the kitchen. We also tested, multiple times, for food intolerances.

            But I think what made the biggest difference was getting me off gluten, dairy and processed sugar. Oh, and, of course, off aspartame.

            I've been FAIRLY stable now for 6 years. He had claimed he could reverse my symptoms; that didn't happen. But stability is worth a lot.

            After trying a few other things that were unsuccessful, he finally said there was nothing more he could do for me.

            I found a new functional medicine doctor and we continue to try new things that are probably helping.

            I also still see my regular PCP; he seems supportive of my alternative care. And I've switched from a very traditional neuro to a functional medicine neurologist. I like to have a healthcare providers who are supportive if each other, rather than denigrating providers who practice medicine somewhere differently than they do. I can likely benefit from both traditional medicine and alternative medicine.

            You might want to look into supplementing your health care with something like this.

            - Faith


            ~ Faith
            MSWorld Volunteer -- Moderator since JUN2012
            (now a Mimibug)

            Symptoms began in JAN02
            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
            .

            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

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