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To my fellow SPMS'ers

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    To my fellow SPMS'ers

    Wondering how many that are now classified as SP started a DMD early after their RR diagnosis?

    And if so which DMD?

    #2
    Hi bluegiraffe -In hindsight, my first MS flare was in 1989, but was misdiagnosed over and over again for 10 years.

    After a bad bout of ON, I was finally dx'ed in 1999.

    I first started on Avonex immediately and was on it for 6 years.
    Switched to Copaxone for 5.5 years before being told I was in the SP group.

    Thankfully, newly dx people now have many (and more effective) choices to choose from.

    What about you? What's your journey been like?
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Hi Seasha,

      I was diagnosed in 1997 and did not start copaxone till 2007 .

      Comment


        #4
        Have just "graduated" to SPMS per my neurologist at my visit last week.

        I was "formally" diagnosed in 1995, however had symptoms (neurogenic bladder, odd numbness and tingling in my arm/hand) since 1986. I too got a variety of "misdiagnosis" - my urologist actually said after dx my neurogenic bladder that he "found it unusual, because he usually only saw this diagnosis in MS patients". He did treat my neurogenic bladder appropriately - I learned how to self cath and coped with this "symptom".

        Since my symptoms started before the advent of MRI's it took awhile to get formally diagnosed with RRMS. I did get an MRI in 1995, after coming home from a summer vacation (I spent a week in Arizona heat - and they initially thought I had a stroke, turned out to be an exacerbation complete with ON). Back in "the day" the only DMD was Betaseron and IV steroids available for treatment options. I was part of some of the early trials with Betaseron, which made me feel suicidal (!) so no meds for awhile. Copaxone started being used, I did that for 5-6 years, but didn't keep me from developing more plaques. In 2007, I switched to Tysabri which I did well with, unfortunately I became JCV positive and discontinued using that in 2012. Tried both Gilenya and Techfedera (couldn't tolerate either of these). I had been living without using any DMD since 2012.

        Am having a relapse right now, being treated with IV steroids for 3 days + Baclofen. Will see how it goes, I go back in a couple of months, my neuro mentioned possibility of trying Ocrevus and giving me Botox injections in my leg if spasticity doesn't respond to Baclofen.

        I'm glad that there are now so many choices for those newly diagnosed, I am hoping that with all the research being done that someone will eventually find a cure for MS!
        Don't worry about the world coming to an end today.
        It's already tomorrow in Australia" - Charles Schultz

        Comment


          #5
          ON in 1990. No diagnosis and there were no DMD to take. Had the invisible symptoms and decided to ignore and told no one. 2003 huge exacerbation, solumetrol and started on Copaxone. Until 2016 I took the daily injection and did very well. The past year I have progressed into secondary MS.

          Novartis has just finished Phase III of siponimod and FDA is fast tracking it. If all goes well it should be available in US in March 2019. The results for SPMS look good. The first drug that offers hope. My MS Specialist is excited about this drug.

          Comment


            #6
            My first flare was in January 2002, almost 17 years ago. It took almost two years to diagnose me, so I was on no meds during that time. During that time, I had multiple flares and the number of lesions in my brain increased exponentially.

            I started on Betaseron in November 2003, following dx. I remained on Betaseron for five years, but my MS was pretty unmanageable during those years. I had one or two major MS flares most of those years, often resulting in a one or two or three week hospitalization.

            In 2008, I switched from my general neurologist in Wichita, KS to an MS Specialist at KU Med Center in Kansas City. After doing a repeat MRI and a blood test (I'd had 7 MRI's prior to dx, but none since 2003), she confirmed that I had MS, because she'd initially wondered if the dx was accurate.

            She immediately told me that, the general thought was that if a patient was experiencing a flare every year, the medication was only "borderline effective". "You aren't even borderline", she said. She switched me to Copaxone. I've been on Copaxone since then. Initially Copaxone 20 and now Copaxone 40. No major flares for eight years. No flares at all for four years.

            I suspect that if I'd been dx earlier, and if I hadn't also wasted 5 years on Betaseron, that those first 7 years with MS would have been much better spend on Copaxone. There would be fewer lesions that had the chance to form back then. Those lesions are now accumulating damage, all these years later.

            Two visits ago, almost a year ago, my MS Specialist said that I was moving towards SPMS. I haven't asked her since. I know they don't like to have to document that because insurance companies might refuse to pay for treatment for SPMS.
            ~ 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.

            Comment


              #7
              Hi guys I have had MS since early 90's but I didn't start any DMD's until 2015, the reason I didn't start any new drugs at the time is I had my pituitary gland removed in 1979 and have been on a cocktail of hormones ever since and my Dr's back then had the opinion that the hormones were masking my MS symptoms.

              Now with the benefit of hindsight I feel I should have started the MS treatment earlier and I may not be suffering as much now, I try to find Dr's I can trust and then follow their lead. Craig

              Comment


                #8
                It seems the overall theme here is that we didn't start on a DMD right away - mostly due to misdx at the time and the damage was already done which only worsened over time to the degree that we ended up as SP.

                Which is so very important that those who are newly dx should start on a drug right away and be aggressive in finding a good neuro! Preaching to the choir here
                1st sx '89 Dx '99 w/RRMS - SP since 2010
                Administrator Message Boards/Moderator

                Comment


                  #9
                  Originally posted by Seasha View Post
                  It seems the overall theme here is that we didn't start on a DMD right away - mostly due to misdx at the time and the damage was already done which only worsened over time to the degree that we ended up as SP.

                  Which is so very important that those who are newly dx should start on a drug right away and be aggressive in finding a good neuro! Preaching to the choir here
                  Yup, that's right.
                  ~ 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.

                  Comment

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